Terms of Use

Meagan’s Memorial Hope At Home Online Talent Show: TERMS OF WEBSITE USE



This site has been created for your personal enjoyment and entertainment. By visiting the Site, you accept and agree to be bound by these Terms of Use, including any future modifications, which constitute an agreement (“Agreement”) between you and the Company and to abide by all applicable laws, rules and regulations (collectively, “Applicable Law”). Please read this Agreement carefully. Company reserves the right to modify or amend this Agreement without notice at any time, and such modification(s) will be effective upon posting on the Site. All material modifications will apply prospectively only. Your continued use of the Site and/or Company Services following any such modification constitutes your acceptance and agreement to be bound by the Agreement as so modified. It is therefore important that you review this Agreement regularly. If you do not agree to be bound by this Agreement and to abide by Applicable Law, you must immediately leave the Site and discontinue your use of Company Services. You may receive a copy of this Agreement by emailing us at with the following subject: Website Terms of Use Agreement. Your access to certain Site features may require you to accept additional terms and conditions applicable to such features, in addition to this Agreement, and may require you to download Software or Content (each as defined below) and additional terms may apply. Any questions or comments regarding, or problems with, the Site should be sent to the Site Administrator at:



This Agreement shall remain in full force and effect while you use the site or have an account. Company may terminate your subscription at any time, without warning. Even after your account expires or is terminated, this Agreement will remain in effect.



You shall retain all ownership rights in your User Content.  By submitting the User Content, you hereby grant to EDS Wisconsin, Inc., in perpetuity, a non-exclusive, royalty-free, sublicenseable and freely transferable license to use, reproduce, distribute, prepare derivative works of, display, adapt, reformat, translate, and otherwise exploit and perform all or any portion of the User Content for any purpose whatsoever, throughout the universe, including, without limitation, in connection with (i) the Program, including, without limitation, advertising, marketing, promotion, merchandising and the exploitation of any and all ancillary and subsidiary rights, and redistributing part or all of the Program (and derivative works thereof), and (ii) the business of EDS Wisconsin, Inc and/or its affiliated companies, including, without limitation, Internet websites, applications, interactive television, video on demand and any other media or technology (including, without limitation, Internet protocol, wireless or interactive platforms or interfaces) through which EDS Wisconsin, Inc. or its Affiliates may distribute content to end users, whether now existing or hereafter developed (together, the “Platforms”), in any and all media formats and through any and all media distribution and advertising and promotional purposes, without accounting, notification, credit or other obligation to you. For the avoidance of doubt, without limiting the generality of the rights granted to EDS Wisconsin, Inc. and/or any Affiliated entity, these rights include, without limitation, the absolute right to edit and/or alter any User Content distribute and synchronize all or any portion of your User Content in timed relation to any other visual elements; to web cast, pod cast, re-publish, re-broadcast, re-platform, port, syndicate, route, and link to and from all or any portion of your User Content; to encrypt, encode and decode, and compress and decompress all or any portion of your User Content; to edit, mix, combine, merge, distort, superimpose, create or add special effects, illusions and/or other material to or of all or any portion of your User Content; to create composite, stunt, comic or unusual photographs, videos, animations, motion pictures and/or voice reproductions from all or a portion of your User Content; and to excerpt and/or extract portions of your User Content in order to host, store, index, categorize and display your User Content on or through the Platforms.  EDS Wisconsin, Inc. has no obligation to review your User Content or to use your User Content in any manner whatsoever.



Company may provide, or third parties may provide, links to other websites, social media services, applications, resources or other services created by third parties (“Third Party Services”). When you engage with the Third Party Service, you are interacting with the third party, not with Company. If you choose to use a Third Party Service and share information with it, the Third Party Services may use and share your data in accordance with the Third Party Service’s privacy policy and your privacy settings on such Third Party Service. In addition, the third party providing the Third Party Service may use other parties to provide portions of the application or service to you, such as technology, development or payment services. Company is not responsible for the content or practices of any websites other than the Site, even if the website links to the Site and even if it is operated by an affiliated company or company otherwise connected with the Site. Company makes no warranties, express or implied, as to the Third Party Services (including the accuracy and completeness of information supplied or the privacy practices thereof). If you decide to access other websites, you do so at your own risk. If Company has provided links or pointers to other websites on the Site or the Company Services, they are solely as a convenience to you and no inference or assumption should be made and no representation should be implied that Company is connected with, operates, controls or endorses these websites. When you access other websites or Third Party Services, Company encourages you not to provide any personally identifiable information unless you know and are comfortable with the party with whom you are interacting and their privacy policy.


If you are interested in creating hypertext links to the Site, you must contact Company at before doing so. In establishing hypertext links, you must not represent in any way, expressly or by implication, that you have received the endorsement, sponsorship or support of the Site or Company, including its respective employees, agents, directors, officers and/or shareholders.


Company takes no responsibility for third party advertisements which are posted on the Site or the Company Services, nor does it take any responsibility for the goods or services provided by its advertisers.



Company may deliver newsletters and email alerts to its subscribers on a variety of Company services and programming. If you would like to subscribe to any of the newsletters Company offers, you may do so by clicking on the “Newsletter” link near the bottom of all site pages. If you would like to unsubscribe from any Company newsletter or email alert, you may do so by clicking on the “unsubscribe” link at the bottom of the Company newsletter or email alert that you have signed up to receive.



The Site and Company Services are provided “AS-IS” and “as available” and Company does not guarantee or promise any specific results from use of the Site and/or Company Services. Company expressly disclaims any warranties and conditions of any kind, whether express or implied, including but not limited to, the implied warranties of merchantability, fitness for a particular purpose and non-infringement. In particular, Company makes no warranty that your use of the Site and/or Company Services will be uninterrupted, timely, secure or error-free or that any information obtained by you on, through or in connection with the Company Services or Third Party Services (including but not limited to, through User Content or third party advertisements) will be accurate or reliable. Under no circumstances will Company be responsible for any loss or damage, including but not limited to, property damage, personal injury or death, resulting from use of the Site and/or Company Services, problems or technical malfunction in connection with use of the Site and/or Company Services, attendance at a Company event, any material downloaded or otherwise obtained in connection with the Site and/or Company Services, any User Content, third party advertisement or Third Party Service posted on, through or in connection with the Site and/or Company Services, or the conduct of any users of the Company Services, whether online or offline. Your use of User Content, third party advertisements, Third Party Services and the goods or services provided by any third parties is solely your responsibility and at your own risk. User Content, third party advertisements and Third Party Services do not necessarily reflect the opinions or policies of Company.






You agree to defend, indemnify and hold harmless Company, any of their affiliated companies and producers, sponsors and advertisers and each of their parents, affiliates and related companies together with their respective employees, agents, directors, officers and shareholders, from and against all the liabilities, claims, damages and expenses (including reasonable attorney’s fees and costs) arising out of your use of the Site and/or Company Services; your failure to use the Site; your breach or alleged breach of this Agreement or your breach or alleged breach of the copyright, trademark, proprietary or other rights of third parties.



Company reserves the right to immediately terminate your use of, or access to, the Site at any time for any or no reason, with our without prior notice or explanation, and without liability. Furthermore, even after your user account or access to a section of the Site is terminated, this Agreement will remain in effect.



Software available in connection with the Site and/or Company Services (the “Software”) is further subject to United States export controls. No Software may be downloaded from the Site or Company Services or otherwise exported or re-exported in violation of U.S. export laws. Downloading or using the Software is at your sole risk.



Any dispute arising hereunder shall be arbitrated in binding arbitration in Madison, WI, and before a mutually selected arbitrator experienced in the United States.  Each of you and Company also agrees to give up the right to have claims heard by a jury and the ability to seek to represent, in a class action or otherwise, anyone but each of you and Company. The only exceptions to this are that (i) each of you and Company retains the right to sue in small claims court and (ii) each of you and Company may bring suit in court against the other to enjoin infringement or other misuse of intellectual property rights. 


Governing Law

This Agreement shall be deemed negotiated and entered into and shall be construed in accordance with the laws of the State of Wisconsin and the United States applicable to agreements which are negotiated, signed and performed within such state.  All actions, proceedings or litigation arising out of this Agreement shall be instituted and prosecuted solely within the State of Wisconsin. Talent hereby consents to the jurisdiction of the state courts of Wisconsin and the federal courts located in the city of Madison, Wisconsin as to any matter arising out of or relating to this Agreement, and agree that Wisconsin is a convenient forum.


Except with respect to Disputes to be resolved through an arbitration process in accordance with the Arbitration Agreement contained above, you and Company agree to submit to the exclusive jurisdiction of the courts located in Madison, Wisconsin, to resolve any Dispute arising out of the Agreement or the Company Services. YOU HEREBY KNOWINGLY, VOLUNTARILY AND INTENTIONALLY WAIVE ANY RIGHT YOU MAY HAVE TO A TRIAL BY JURY IN RESPECT OF ANY LITIGATION (INCLUDING, BUT NOT LIMITED TO, ANY CLAIMS, COUNTERCLAIMS, CROSS-CLAIMS, OR THIRD PARTY CLAIMS) ARISING OUT OF, UNDER OR IN CONNECTION WITH THIS AGREEMENT.





You agree to indemnify and hold Company, companies affiliated with Company, producers, distributors and/or other entities associated with the producers of Company content, each advertiser, sponsor and their advertising agencies, subcontractors and other partners, and their respective officers, agents, partners and employees, harmless from any loss, liability, claim, or demand, including, but not limited to, reasonable attorneys’ fees, made by any third party due to or arising out of or in connection with your use or misuse of the Site or the Company Services (including, without, limitation, any use of your account, whether or not authorized by you), your breach of this Agreement, your violation of any rights of another or any content that you transmit through the Company Services.


Unsolicited Submissions

Company does not knowingly accept, via the Company Services or otherwise, unsolicited submissions including, without limitation, submissions by you of blog ideas, articles, scripts, story lines, fan fiction, characters, drawings, information, suggestions, proposals, ideas or concepts. Company requests that you do not make any unsolicited submissions. Any similarity between an unsolicited submission and any elements in any Company or Affiliated Company creative work including, without limitation, a film, series, story, title or concept would be purely coincidental. If you do send any submissions to Company via the Company Services that are unsolicited (including but not limited to any Forum), however, you agree that (i) your unsolicited submissions are not being made in confidence or trust and that by making such submissions no contractual or fiduciary relationship is created between you and Company; (ii) any such unsolicited submissions and copyright become the property of and will be owned by Company (and are not User Content licensed by you to Company under “Your Proprietary Rights in and License to Your User Content”) and may be used, copied, sublicensed, adapted, transmitted, distributed, publicly performed, published, displayed or deleted as Company sees fit; (iii) you are not entitled to any compensation, credit or notice whatsoever in connection with such submissions; and (iv) by sending an unsolicited submission you waive the right to make any claim against Company or Company Affiliates relating to any unsolicited submissions by you, including, without limitation, unfair competition, breach of implied contract or breach of confidentiality.



The failure of Company to exercise or enforce any right or provision of this Agreement will not operate as a waiver of such right or provision. The Section titles in this Agreement are for convenience only and have no legal or contractual effect. This Agreement operates to the fullest extent permissible by law. Except as otherwise expressly provided herein, if any provision of this Agreement is unlawful, void or unenforceable, that provision is deemed severable from this Agreement and does not affect the validity and enforceability of any remaining provisions.


You agree that any notices the Company may be required by Applicable Law to send to you will be effective upon Company’s sending an e-mail message to the e-mail address you have on file with Company or publishing such notices on the informational page(s) of the Company Services.


You agree that no joint venture, partnership, employment, or agency relationship exists between you and Company as a result of this Agreement or your use of the Company Services. A printed version of this Agreement and of any notice related to it shall be admissible in judicial or administrative proceedings based upon or relating to this Agreement to the same extent as other business documents and records originally generated and maintained in printed form.


Nothing contained in this Agreement limits Company’s right to comply with governmental, court and law enforcement requests or requirements relating to your use of the Company Services or information provided to or gathered by us in connection with such use.


Please contact the Site Administrator at with any questions regarding this Agreement.




All materials contained in Site and Company Services are protected by copyright and trademark and shall not be used for any purpose whatsoever other than private, non-commercial viewing purposes. Reproduction, duplication, distribution, derivative works, and other unauthorized copying or use of stills, audio, video footage, or any other materials contained in Site or Company Services is expressly prohibited.




  1. Introduction


This site (“Site”) is operated by EDS Wisconsin, Inc., to accept, process and administer online auditions (“Services”).


The Site and the Services (as defined below) are for a general audience, and are not targeted to children.  Site operators do not knowingly collect personal information from children under 13 years of age.


This Privacy Policy applies to all “users,” including both those who use some of the Services without being registered or subscribing to Services and those who have subscribed to one or more Service, and/or have registered with Us to create a profile and/or upload an online audition (collectively “Auditioner”). This Privacy Policy describes the collection and use of users’ personal information (e.g., information that identifies a specific person, such as full name or email address) where that information is not otherwise publicly available on the Services. EDS Wisconsin, Inc. also provides information on the Site’s Privacy Settings and describe generally the practices for handling non-personally identifiable information (e.g., interests, demographics and site usage) to the extent such information is associated with a particular user or user account.


  1. Submission and collection of information on the services


Registration Information is the information you submit to register for a Service, for example, to create an account, post comments, receive a newsletter, or enter a contest or sweepstakes. Registration Information may include, for example, name, email address, gender, and birthday.


Public Information and Posts consist of comments or content that you post to the Services and the information about you that accompanies those posts or content, which may include a name, user name, comments, likes, status, profile information and picture.


Information from Social Media. If you access or log-in to a Service through a social media or other service or connect a Service to a social media or other service, the information collected may also include your user ID and/or user name associated with that social media service, any information or content you have permitted the social media service to share with us, such as your profile picture, email address or friends lists, and any information you have made public in connection with that social media service. When you access the Services through social media services or when you connect a Service to social media services, you are authorizing EDS Wisconsin, Inc. to collect, store, and use such information and content in accordance with this Privacy Policy.


Activity Information. When you access and interact with the Services, EDS Wisconsin, Inc. may collect certain information about those visits. For example, in order to permit your connection to the Services, our servers receive and record information about your computer, device, and browser, including potentially your IP address, browser type, and other software or hardware information. If you access the Services from a mobile or other device, EDS Wisconsin, Inc. may collect a unique device identifier assigned to that device, geolocation data, or other transactional information for that device. At this time EDS Wisconsin, Inc. do not respond to browser ‘Do Not Track’ signals, as EDS Wisconsin, Inc. awaits the work of interested stakeholders and others to develop standards for how such signals should be interpreted.


Cookies and other tracking technologies (such as browser cookies, pixels, beacons, and Adobe Flash technology including cookies) are comprised of small bits of data that often include a de-identified or anonymous unique identifier. Websites, apps and other services send this data to your browser when you first request a web page and then store the data on your computer so the website, app or other service can access information when you make subsequent requests for pages from that service. These technologies may also be used to collect and store information about your usage of the Services, such as pages you have visited, content you have viewed, search queries you have run and advertisements you have seen.


Third parties that support the Services by serving advertisements or providing services, such as allowing you to share content or tracking aggregate Services usage statistics, may also use these technologies to collect similar information. EDS Wisconsin, Inc. does not control these third-party technologies and their use is governed by the privacy policies of third parties using such technologies. For more information about third-party advertising networks and similar entities that use these technologies, see, and to opt-out of such ad networks’ and services’ advertising practices, go to


Most browsers are initially set to accept cookies, but you can change your settings to notify you when a cookie is being set or updated, or to block cookies altogether. Please consult the “Help” section of your browser for more information. Users can manage the use of Flash technologies, with the Flash management tools available at Adobe’s website, see Please note that by blocking any or all cookies you may not have access to certain features, content or personalization available through the Services.


Information from Other Sources. EDS Wisconsin, Inc. may supplement the information EDS Wisconsin, Inc. collects with information from other sources, such as publicly available information from social media services, commercially available sources and information from Company Affiliates or business partners.




EDS Wisconsin, Inc. uses the information EDS Wisconsin, Inc. collects from and about you to provide the Services and features to you, including: to measure and improve those Services and features; to improve your experience with both online and off-line Services by delivering content you will find relevant and interesting, including advertising and marketing messages; to allow you to comment on content, and participate in online games, contests, or rewards programs; to provide you with customer support and to respond to inquiries. When the information collected from or about you does not identify you as a specific person, EDS Wisconsin, Inc. may use that information for any purpose or share it with third parties, including the purposes below.


EDS Wisconsin, Inc. uses the information EDS Wisconsin, Inc. collect from and about you for these additional purposes:


To allow service providers to assist us in providing and managing the Services. EDS Wisconsin, Inc. may make your information available to certain third party service providers, such as contractors, agents or sponsors, who help us manage or provide the Services.


To allow social sharing functionality. If you log in with or connect a social media service account with Services, EDS Wisconsin, Inc. may share your information, including your user name, picture, and likes, as well as your activities and comments with other Services’ users and with your friends associated with your social media service. EDS Wisconsin, Inc. may also share the same information with the social media service provider. By logging in with or connecting your Services account with a social media service, you are authorizing us to share information EDS Wisconsin, Inc. collect from and about you with the social media service provider, other users and your friends and you understand that the social media service’s use of the shared information will be governed by the social media service’s privacy policy. If you do not want your personal information shared in this way, please do not connect your social media service account with your Services account and do not participate in social sharing on Services.


To provide co-branded services and features. EDS Wisconsin, Inc. may offer co-branded services or features, such as contests, sweepstakes or other promotions together with a third party (“Co-Branded Services”). These Co-Branded Services may be hosted on the Services or on the third party’s service. By virtue of these relationships, EDS Wisconsin, Inc. may share the information you submit in connection with the Co-Branded Service with the third party. The third party’s use of your information will be governed by the third party’s privacy policy.


To deliver relevant advertisements. EDS Wisconsin, Inc. and/or and our service providers may use the information EDS Wisconsin, Inc. collects from and about you to deliver relevant ads to you when you use the Services or another service. As noted above, third-party advertising networks and advertisers may use cookies and similar technologies to collect and track information such as demographic information, inferred interests, aggregated information, and activity to assist them in delivering advertising that is more relevant to your interests. To find out more about third-party advertising networks and similar entities that use these technologies, see, and to opt-out of such advertising networks’ and services’ advertising practices, go to


To contact you. EDS Wisconsin, Inc. may periodically send promotional materials or notifications related to the Services. If you want to stop receiving promotional materials, follow the unsubscribe instructions at the bottom of each email. There are certain service notification emails that you may not opt-out of, such as notifications of changes to the Services or policies. If you have installed a mobile app and you wish to stop receiving push notifications, you can change the settings either on your mobile device or through the app.


To share with our Company Affiliates. EDS Wisconsin, Inc. may share your information with companies with affiliated for the purposes described in this Privacy Policy. Users who visit these affiliated company services should still refer to their separate privacy policies, which may differ in some respects from this Privacy Policy.


To share with business partners. EDS Wisconsin, Inc. may share your information with business partners to permit them to send you marketing communications consistent with your choices.


To protect the rights of EDS Wisconsin, Inc. and others. There may be instances when EDS Wisconsin, Inc. may disclose your information, including situations where EDS Wisconsin, Inc. have a good faith belief that such disclosure is necessary in order to: (i) protect, enforce, or defend the legal rights, privacy, safety, or property of EDS Wisconsin, Inc., our Company Affiliates or their employees, agents and contractors (including enforcement of our agreements and our terms of use); (ii) protect the safety, privacy, and security of users of the Services or members of the public; (iii) protect against fraud or for risk management purposes; (iv) comply with the law or legal process; or (v) respond to requests from public and government authorities.


To complete a merger or sale of assets. If EDS Wisconsin, Inc. sell all or part of our business or make a sale or transfer of our assets or are otherwise involved in a merger or transfer of all or a material part of our business, EDS Wisconsin, Inc. may transfer your information to the party or parties involved in the transaction as part of that transaction.




EDS Wisconsin, Inc. uses reasonable administrative, technical, personnel and physical measures to safeguard information in its possession against loss, theft and unauthorized use, disclosure or modification. However, no one can guarantee the complete safety of your information. If you are asked to select a password to access a Service, you should select a password that contains a combination of letters, numbers and non-alphanumeric characters (for example, %, $ and &) and avoid dictionary words. In addition, you should not use the same password that you use for other business or personal accounts.




If you no longer want to use the Services, please send an email to You may unsubscribe to newsletters by clicking the “unsubscribe” link at the bottom of the newsletter email.




Updates to Privacy Policy. EDS Wisconsin, Inc. may modify this Privacy Policy. Please look at the Effective Date at the top of this Privacy Policy to see when this Privacy Policy was last revised. Any changes to this Privacy Policy will become effective when EDS Wisconsin, Inc. post the revised Privacy Policy on the Services.


Location of Data. The Services are hosted in and managed from the United States. If you are a user located outside the United States, you understand and consent to having any personal information processed in the United States. United States data protection and other relevant laws may not be the same as those in your jurisdiction. This includes the use of cookies and other tracking technologies as described above. As a result, please read this Privacy Policy with care.


Linked Services. The Services may also be linked to sites operated by unaffiliated companies, and may carry advertisements or offer content, functionality, games, rewards programs, newsletters, contests or sweepstakes, or applications developed and maintained by unaffiliated companies. EDS Wisconsin, Inc. is not responsible for the privacy practices of unaffiliated companies, and once you leave the Services or click an advertisement you should check the applicable privacy policy of the other service.


Data Retention. EDS Wisconsin, Inc. will retain your information for the period necessary to fulfill the purposes outlined in this Privacy Policy unless a longer retention period is required or allowed by law.


Remember that even after you cancel your account, copies of some information from your account may remain viewable in some circumstances where, for example, you have shared information with social media or other services. Because of the nature of caching technology, your account may not be instantly inaccessible to others. EDS Wisconsin, Inc. may also retain backup information related to your account on our servers for some time after cancellation for fraud detection or to comply with applicable law or our internal security policies. It is not always possible to completely remove or delete all of your information due to technical constraints, contractual, financial or legal requirements.


Sensitive Information. EDS Wisconsin, Inc. asks that you not send us, and you not disclose, any sensitive personal information (such as social security numbers, information related to racial or ethnic origin, political opinions, religion or other beliefs, health, criminal background or trade union membership) on or through the Services or otherwise.

Pain Management for EDS – Resources

    • CME Accredited Article on Hypermobility Disorders
    • After participating in this CME/CNE activity, the provider should be better able to:
      • Describe the various types of hypermobility.
      • Identify signs and symptoms of Hypermobility Spectrum Disorders.
      • Develop treatment plans for patients with hypermobility disorders that address their specific and unique needs.

Introduction to mast cells and MCAS

Hey everyone, it’s Sam again! I reached out to you guys via the Facebook community a few weeks ago and got a few requests for information on mast cells and MCAS. I personally don’t have MCAS, so it’s not something I research as intently, but I LOVE immunology and thought this would be a really fun thing to talk about.

Immunology can be a scary subject, even for biologists. It’s very detail-oriented, there are a LOT of things going on, and the scientific community still doesn’t understand a lot about how the players in the immune system work. We do know that the immune system interacts with other parts of the body, like the nervous system (neuroimmunology recently crossed my radar and I’m enthralled!), to cause some interesting effects, so immunology is becoming a hotter and hotter topic for research.

The big player in MCAS is, as the name implies, the mast cell. To understand MCAS, we need to break down what mast cells are and what they do.

These guys are mast cells:

They have a bunch of receptors on their cell surface that let them talk to other cells in the body and receive input from both other cells and the environment they’re in. All those dark purple circles you see in the image above are called granules. Many different cell types have granules in them, and they can hold different types of chemicals (often called cytokines or chemokines) depending on what the cell needs to do. Mast cells usually have granules full of histamine, but they can also hold enzymes that chop up proteins (proteases), neurotransmitters like serotonin, and a bunch of other types of chemical messengers and enzymes. Histamine is the compound we usually talk about when discussing mast cells and allergy, and it makes a lot of different things happen depending on where it’s released.

So….what exactly does histamine do? There are 4 main histamine receptors in the body, and when they’re activated, each one can cause different things to happen. Some are more common in different parts of the body, which is why histamine can trigger different kinds of reactions. From typical seasonal allergy-type reactions or skin irritation to GI symptoms, to nervous system effects like nausea and vertigo, and even anaphylaxis, histamine can trigger a wide range of symptoms which is why MCAS can be difficult to diagnose. Many signs can be relatively benign or nonspecific, but when typical allergy testing comes up negative, it may be time to investigate MCAS.

Keep in mind that the other chemicals mast cells release can cause other things to happen, too. It’s not all about histamine!

So how are mast cells activated? Mast cells have cell surface receptors that can bind allergens, specific classes of antibodies, and signals sent out by other immune cells. When activated, mast cells release their granules, which then break open and release their contents into the local environment and trigger other events to happen.

It isn’t fully understood why mast cells don’t behave normally in MCAS. It’s important to note that MCAS is not the same as mastocytosis, which is characterized by an abnormally high number of mast cells; in mast cell activation syndrome, mast cells are activated too easily and are releasing their contents in situations they typically wouldn’t. Some environmental triggers can stimulate mast cells, like excessive heat or cold, sunlight, mechanical irritation, and chemicals or products on skin. There’s an observed correlation between MCAS, POTS, and EDS that isn’t fully understood.

MCAS is a very involved disorder, and it would take significantly more than just one post to do it justice. Hopefully this quick overview was helpful! Don’t hesitate to reach out to me via the EDS, Wisconsin Inc. contact page, or on the EDS & Joint Hypermobility Wisconsin Facebook page if you have anything in particular you’d like for me to discuss in detail.

*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with the information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.


  • Mast cell secretory granules: armed for battle. Wernersson S, Pejler G. 2014. Nature Reviews Immunology. 14: 478-494.
  • Mast cell activation syndrome: a review. Frieri M, Patel R, Celestin J. 2012. Current Allergy and Asthma Reports. 13(1): 27-32.
  • Mast cell activation syndromes. Akin C. 2017. Allergy and Clinical Immunology. 140(2): 349-355.
  • Misbehaving Mast Cells in POTS and Other Forms of Dysautonomia – (I didn’t actually watch this, but thought it would be a great resource!)


Angela Braun
(715) 370-1736

Meagan’s HOPE Memorial Walk
Ehlers Danlos Syndromes Awareness & Suicide Prevention

Wausau, WI: EDS Wisconsin, Inc., EDS Wellness, and the Braun Family are hosting the First Annual Meagan’s HOPE Memorial Walk for EDS Awareness & Suicide Prevention at Wausau’s Oak Island on Saturday, May 5, 2018. Special Guests in attendance include Geneticist Dr. Juan Dong and Jessica Reed of PreventionGenetics, Pain Specialist Linda S. Bluestein, M.D., Executive Director Kendra N Myles of EDS Wellness, Executive Director John Ferman of EDS Awareness, and the Co-Founder of Advanced Tele-Genetic Counseling. A special announcement will be made at 1:00 pm followed by a brief Q & A session and a one mile Walk.

Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing both patients and medical professionals needless suffering. Early diagnosis is validating and empowering for patients, their loved ones and medical professionals! Diagnosis enables proper treatment strategies and fewer unnecessary medical visits.

Born December 12, 1987, Meagan Rae Braun was a kind, caring, loving individual with a most beautiful, gentle soul. She grew up in Medford, WI and most recently resided in Weston. Meagan was an outstanding mother of two young children and truly enjoyed helping others while continually seeking knowledge, truth, peace and harmony. Even so, behind her beautiful smile, Meagan suffered with multisystemic illnesses including EDS, hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS), allergies and sensitivities, and more. Frustrated with limited treatment options for her health, in addition to battling postpartum depression, Meagan lost all hope resulting in her death from suicide on April 24th, 2017. The Walk is being held in honor of Meagan’s gracious spirit.

The Mission of the not-for-profit organization EDS Wisconsin is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Together with the Braun Family and the prestigious national 501(c)3 organization EDS Wellness, this Walk is an opportunity to increase awareness, support, resources, and education for those affected by EDS and suicide. There will be raffle prizes, t-shirts and balloons for participants.

This event is proudly supported and sponsored by Wisconsin Integrative Pain Specialists, Linda S Bluestein, M.D., Prevention Genetics, The Caring Tree Children’s Counseling Center, Advanced Tele Genetic Counseling (ATGC), Concrete Creations of Wisconsin, Inc., EDS Awareness, Mariah Liisa Design, LLC, and Tools of Marketing, Inc.

Please join us at Wausau’s Oak Island on Saturday, May 5, 2018 at 1:00 pm!
For more information on these conditions and to pre-register go to

Angie Braun

FLYER Meagan’s Walk

Meagan's Walk Sponsor List

Why is collagen so important, anyway?

By Guest Author, Samantha Geiger

Hey everyone! Before I dig into some science, I’d like to take a second to introduce myself. My name is Sam and I’m a veterinary medicine student at UW-Madison (I also have a BS in microbiology and genetics), science enthusiast, and fellow zebra. I’m very passionate about science communications and making difficult-to-understand concepts more accessible to people with non-scientific backgrounds. When it comes to EDS, I strongly believe that understanding the biology behind the disease empowers patients and allows them to ask their doctors the right questions to get proper care. Additionally, I want to provide resources for medical professionals so they may learn to care for patients with diseases they may not be familiar with – I’ll be leaving citations at the end of each post for this purpose. I’m exceedingly grateful to EDS WI, Inc. for giving me this opportunity. As this is my first post, I thought it would be fitting to discuss what collagen is, why it’s so important, and why it can cause different manifestations amongst EDS subtypes.

I also want to take a second and clarify a critical point: genes set the template for the body to make proteins, and proteins are the workhorses of the body. Proteins are what actually “do” things and carry out a function. If you have bad blueprints – mutated genes – your body doesn’t make a normal protein. Sometimes, like in the case of EDS, these abnormal proteins can have noticeable effects in the body. Proteins are made in different parts of the body at different levels due to a mechanism called “gene expression.” This is why you have nails at the end of your fingers instead of on your forehead!

Most of us know that collagen is a foundational protein found throughout the body and that it’s essentially a “building block” for different structures, but did you know there have been 29 different collagen proteins identified to date? Some of them are more common or have a bigger impact on the body when they don’t work properly compared to others. The first five types are perhaps the most important and well-understood:

  • Type I collagen is by far the most common in the body and makes up parts of your skin, tendons and ligaments, blood vessels, and bones. It often works in partnerships with other kinds of collagen.
  • Type II is a huge component of cartilage.
  • Types III, IV, and V help anchor cells to each other (using what’s called a “reticular fiber”) and to other types of tissue, in some cases forming barriers called “basement membranes” underneath layers of cells. These collagen types are important for microscopic, cell-to-cell activity.

As you can see, each collagen type has its own job to do, which is why there are different subtypes of EDS that can be described by which collagen protein isn’t working. For example, mutations in type III collagen can cause vEDS. This makes sense because the fibers type III makes are critical for forming the architecture of the heart and major blood vessels and give them the ability to stretch and accommodate changing amounts of blood.

Some types of EDS don’t have collagen mutations at all! In these cases, proteins in the body that have to work with or use collagen are mutated and lose their ability to do their jobs. Essentially, the body’s collagen is fine but it can’t be used properly. In periodontal EDS, C1R, a gene involved in a specific part of the immune system, is mutated and collagen is normal. However, the culprit protein uses collagen to make itself. When C1R can’t do its job, the mouth ends up becoming very inflamed, which can cause dental problems.

We’ve all heard the metaphor that likens collagen in the body to building a house. If you have a crummy foundation – mutated collagen – the house will probably wear out more quickly than it should. To add some nuance to the metaphor, imagine collagen is the wood you use to build your house. It forms the walls, the roof, the floor, and maybe some structures inside like cabinets and doors. All in all, pretty important structures to have in a place to live, right? If all of your wood is bad, it’s going to have pretty serious effects throughout the house. Maybe only the wood you use for your roof is bad – your walls will still stand, but maybe some rain leaks in through the ceiling. Maybe your carpenters don’t know how to use the perfectly fine wood you bought, and that’s the reason your floor caves in.

Thinking about collagen this way can be a really helpful tool for understanding why different types of EDS exist. There isn’t just one type of EDS, just as there isn’t one purpose for the wood you buy to build a house. Medically, you don’t treat similarly or lump together patients with different types of EDS, much like you don’t have your carpenter install your plumbing.

*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.


Preparation and characterization of the different types of collagen. Miller EJ, Rhodes RK. 1982. Methods Enzymol. 82 Pt A 33-64.

Collagen: a overview. Miller EJ, Gay S. 1982. Methods Enzymol. 82: 3-32.

Elastic and Collagenous Networks in Vascular Diseases. Arteaga-Solis E, Gayraud B, Ramirez F. 2011. Cell Struct. 25(2):69-72.

Periodontal Ehlers-Danlos Syndrome is caused by mutations in C1R and C1S, which encode subcomponents C1r and C1s of complement. Kapferer-Seebacher I, Pepin M, Werner R, et al. 2016. AJHG. 99(5):1005-1014.

By Tammy Kosbab, Edited by Jude Houston

The other morning when I woke up ALL of my muscles ached, my head was throbbing, my eyes felt a little puffy, and I really, REALLY did not want to get out of bed. Similar to the past, I couldn’t understand what I did to cause this and knew it was best to forget even trying to figure this out because of the awful brainfog! It seemed my entire body had turned into muck overnight.

Thankfully, because of Dr Lawrence Afrin, Dr Anne Maitland, Dr Mathur, Dr Steinman, and others in the EDS community like EDS Wellness, EDS Awareness, and the EDS Society, I now know that these symptoms were a result of my being swollen, inside and out. I also now know that this swelling is called angioedema and that it is caused by “allergies.” The swelling certainly wasn’t the kind where a stranger could look at me and immediately notice. However, it was similar to the kind of swelling I had experienced my entire life that I always thought meant that I had a chubby face. I used to think that it was normal to have red marks and indents on my skin from my clothing for hours after changing, or similar red marks and indents on my skin from my bedsheets for hours after waking up.

These are some photos of me swollen and not swollen. It is NOT always this noticeable.

Despite my inability to think clearly, it was apparent that there was only one thing I knew I had to do. I reached for the medication that is ALWAYS within my reach because I know it helps significantly. I took the Gastrocrom. Unhappily, I crept out of bed, went to the bathroom and caught a glimpse of the mirror. Once again, I saw my “old” swollen face, which is the face that I previously thought was ‘normal.’ There was a red rash on my face, a large indentation and two blisters where my skin must have tried to swell under my CPAP mask when I was asleep. To test my Mast Cell Activation (MCA) diagnosis, I stepped on the scale to see if indeed the diagnosis was correct and…literally overnight, I gained about 6 pounds from my previous weight. Wow! Prior to this diagnosis, I often gained 9 pounds in 12 hours or less and I thought that was normal.

I’m still amazed that ALL of the seemingly unrelated symptoms came back. Even now, days later, when I stand up too fast, I got dizzy and when I am upright for too long, I become very tired. I have had burning tongue/mouth sores, bleeding gums, heart palpitations, nerve pain, muscle pain, fascia pain, eyeball pain, ear pain, joint pain, and in case I forgot to mention it – I had debilitating pain! Sadly, like many others Ehlers-Danlos Syndrome (EDS), this is how I previously felt on a daily basis. It had became my normal throughout my entire life until I was properly diagnosed.

Since my diagnosis of MCAD, my health issues have changed for the better these past 4 months because now I know why my issues escalate and what I can do about it to perhaps reduce the symptoms.

Here is a quick and hopefully simple explanation of how I understand MCAD for those who don’t quite understand it. Mast cells throughout the body contain histamine, heparin, cytokines and other “mediators.” Mast cells are commonly known for releasing these mediators in response to SPECIFICS allergens for retain people, such as strawberries, peanuts, mold, pollen, grass, and others. These are called IgE mediated AKA specific allergies and this is what the allergist would look for when performing a skin prick test. THis IS NOT Mast Cell Activation Disorder.

Instead, MCAD is when a person has a normal number of unstable mast cells which are easily triggered to release the mediators once a certainly threshold is reached. It’s like mast cells with ADHD – they overreact and can release mediators to just about any non-specific thing in the environment.

In other words, the resulting histamine and other mediatora that are constantly being released in the body wreaks havoc! If you want to know what MCAD can do to a person research the word “histamine” and you will find histamine allows blood vessels to be permeable and thus, this is why fluid leaks out of the vessels resulting in tissue swelling.

Think about this: Where are blood vessels located? All over, mostly INSIDE the body, right?
Can we see them? Not usually.
So if a blood vessel in the ____________ (insert internal body part name here such as stomach, colon, brain, spinal column, muscle, etc.) is leaky, can a person see that this internal body part is swollen? Probably not.
Can a person feel it? Well I certainly can, but thats only because I now know that these things aren’t normally normal and since then hey typically happen at the same time that I have all of the other symptoms, it makes complete sense.

The day before this happened it was a beautiful spring day with wonderful fresh-air – pollen and all. I tried to stay inside but have you ever tried to stay away from the air?!? Probably my biggest mistake that day was forgetting to take one of four doses of the Gastrocrom. Live and learn!

Gastrocrom is a medication that “calms” down or stabilizes the mast cells. It’s like taking a bag of oranges and making the holes in the net smaller so the oranges don’t fall out so easily. Imagine the net is the mast cell and it is holding the oranges, which represent the histamines and other mediators.

When the histamines, for example, are released they circulate in the blood until they find a place where they can plug in and be utilized. These are called histamine receptors. There are 4 receptors in the body, but only two of them have known medications that block the action of the Histamines. THESE are called H1 and H2 receptor blockers. I take the H1 blocker called Allegra in a high dose and the H2 blocker Pepcid in a higher than normal dose under the guidance of my doctor.

Tomorrow will be my recovery day which includes relaxation, a chance to retighten the netting and decrease the swelling while also getting work done. The fridge and toilet are also close by so I think I should be good. Ah yes, this is life with the ups and downs of MCAD.

If this sounds like you or if you wish to understand more, please do research and find someone to help you. It is very important when finding someone to help you to remember this: MASTOCYTOSIS IS A CONDITION OF TOO MANY CELLS and it is not MCAD. Also there is not a lot of research that has been done on MCAD and many medical professionals may have never even heard of it.

My favorite resource is the book: Never Bet Against Occam by Lawrence Afrin. Recently I had the pleasure of meeting him at an EDS Wellness’s retreat “Wellapalooza”. Fortunately, I had the amazing opportunity to have relatively long conversations with both Dr. Afrin and Dr Maitland about MCAD in 2017, and was also able to hear their presentations on MCAD several times in person. This information presented greater understanding and direction and provided an opportunity to take back control of my health even when a spring day fills my life with fresh air. Find their presentations on EDS Awareness and EDS Wellness websites.

How I Work Full-Time With Ehlers-Danlos and Persistent Pain

Written by Tammy Kosbab, Edited by Jude Houston

This article was written for and is dedicated to everyone who has said to me, “How do you do it?”

A friend recently told me of a conversation she had with her husband shortly after her diagnosis in regard to her continued desire to work despite her pain. His reply to her, in the most loving way of course, was “You can either be in pain and not work, or be in pain and work.” If you think about this, it is so very true! Regardless of what we are doing, if a person has chronic pain, better now described as persistent pain, they will have pain no matter what they are doing. Yet the reality is it is not easy to work full time with persistent pain. I must say though due to my dedication (um, obsession!) with the work I do, I have found “where there’s a will there’s a way” is most certainly true for me. I try to maintain a positive outlook on my pain. Instead of a barrier preventing me from doing things I wish to do, my pain is an obstacle to overcome (sometimes a tremendous obstacle) which ultimately makes me stronger.

As a person who has always said things could be done when everyone else says it couldn’t be done, I will still try and envision an outcome that I realize may actually be unrealistic. This is because I believe a person MUST be able to envision a positive outcome in order for the task to be completed – I mean REALLY visualize an optimistic result, from the emotions it brings, along with the smell, taste, and everything which goes with successful completion of the task. Even if you don’t complete 100% of the task, you will still be closer to your goal of 100% than if you had never envisioned it at all. Don’t get me wrong, I have certainly had many days where I am extremely frustrated, feel defeated, wonder why I even try, and yes, I even cry at times. Sometimes those of us with persistent pain go to this dreary place. In the blog titled, When Fear of Missing Out is Reality by Stephanie Goettl from February 5, 2018 at, Stephanie says, ”Acknowledge the frustration but DO NOT live there. If you pretend it doesn’t bother you, that usually makes it worse. Admitting you’re hurting over the unfairness of it is okay, but then, move on.”

My goal in this blog post is to provide helpful hints on how I am able to work full time despite pain and limitations in hopes others may utilize some of these suggestions idea. Some of the items are obvious, such as workplace ergonomics, while others are not-so-obvious suggestions many people may “know’ but don’t realize how helpful they may be! I hope I am able to help some of you with your desire to work by providing this information.

First and foremost, enjoy your job completely! I understand some of you may disagree with me for saying this and you may think enjoying a job isn’t even possible. I don’t believe YOU! There is something that each one of us enjoys and is passionate about. Once you know what that is, then ask yourself, “How could I earn an income doing what makes me happy?” If you’re not qualified to earn income in that particular role, maybe you could enroll a few classes to further your education. If taking classes has been difficult in the past, maybe the suggestions below may provide some direction to help you. The reason this is my number one idea is because if you’re fully engaged in your job, or anything really, this active engagement is a distraction to the pain. Find work you enjoy doing so much that you become so consumed that you’re mind has no room for pain. To be perfectly honest, this is one of the biggest reasons that I work as much as I do!

Have a GREAT boss. If you have any doubts of good rapport with a supervisor when you’re interviewing for a position, avoid taking this new position. Oftentimes it isn’t so much the job itself that causes struggling as this occurs much more often when you have an overbearing, micromanaging, or rigid boss. It most definitely makes simple things, like frequent position changes, flexible hours, or requests for accommodations much more challenging. There is not a job out there that should cause increased pain. The job market in the region I live is competitive enough to accommodate our next generation of workers. The next generation of workers have learned flexibility while they attended school, unlike my generation where we sat at one desk for nearly the entire day and there were little to no options for “flexibility.” This new generation of employees knows how important it is to engage in movement and mindfulness throughout daily living in order to be healthy and more productive. I am very blessed as my boss is amazing. She allows me to have flexible hours as long as I complete my work on time, which is an absolute necessity when a person has frequent doctor appointments for themselves as well as for his or her children who also have chronic conditions and are home from school more frequently than other children.

Supportive family, friends, and coworkers. I have a wonderful network of family, friends and coworkers. I believe they are supportive of me because they know I do my best every day. They are supportive because they know that I do what I am able, when I am able, and that I am motivated to do everything I can on a daily basis to feel well because I am driven by the need to help others as I do in my career. Family and friends also know that I value my integrity and always try to do the right thing. My lack of a mouth barrier may sometimes make me look like the bad guy, such as when I tactfully – or not-so-tactfully – tell someone they need to put on deodorant. At the same time, people know they never have to wonder what I am thinking. People are aware if I have something to say, I will say it and I feel like people actually really appreciate that I can be trusted to tell them the truth, even if it isn’t what they want to hear.

Affirmations book. Almost every day prior to work, I typically start my day reading something which inspires me the rest of my day. A favorite book of mine is called The Language of Letting Go by Melody Beattie. This meditation book is organized by date so each date has an inspirational message. I prefer to simply use my intuition and open to whichever page I feel guided to TRUSTING I will open to the page holding the message I need to hear this particular day. This is one reason I ended up writing this blog today. I just happened to open to June 19th and the title was Making Life Easier. The overall message is that life does not have to be hard! The author states, “Our value and worth are not determined by how hard we struggle.” Throughout this helpful book, the author explains the need to let go of the belief that life has to be hard, to let things flow and trust that they will work out. Trust, Acceptance, and Faith!

Medication. For those who have medical conditions, it is important to not miss the medications that are necessary and helpful to manage their conditions. For me, I set timers for reminders to take my medication throughout my workday. Most times I am so engaged in my work I would otherwise forget to take it and when this occurs, I suffer a big crash and then I am not able to work productively. For those who have Ehlers Danlos Syndromes (EDS), oftentimes they have “allergies” go along with it. Newer research is finding that these allergies are caused by non-specific allergens due to overactive mast cells releasing histamines and other mediators throughout the day as a sort of hyper-response. Is it a coincidence that many of us get tired after eating? Is it a coincidence that we experience weakness and fatigue when we get hot? Mast cells can be triggered by just about anything, similar to a full bag of oranges where the oranges are about the same size as the holes in the mesh bag – any little movement would trigger the oranges, as compared to histamines in the mast cells, to fall out! This overactive mast cell condition is called Mast Cell Activation Disorder (MCAD), and newer research is finding that treating these overactive mast cells with mast cell stabilizers like Gastrocrom, as well as taking antihistamines that target BOTH the H1 and H2 receptors on a regular basis has helped many with pain, brain fog, migraines, IBS, and other common symptoms that persons with EDS experience! For more information, please see the other resources about MCAD at On a different note, I try not to switch medications often. I take the least amount I need to take for my condition(s) but I take them as regularly as I can. The reason that I feel this is so important is because many people with EDS have medication metabolism issues and oftentimes one medication may make a different one work better or worse. This is called a drug-drug interaction. Therefore, regularity is very important to remain stable.

Hand sanitizer and antimicrobial wipes. We must stay healthy and not get sick. If you are in a workplace outside of your home, I thoroughly recommend these products to avoid illness but if you dislike these products, that’s fine. I know they can be controversial but so far they have helped me even within my home workplace.

Workplace ergonomics:

Standing Desk. I appreciate my standing desk tremendously because it offers options. It allows me ability to work while standing as well as when sitting. I also have the option of how high or low I prefer the desk to be. If I need to rest one foot on my chair while I am working, I am able to move the desk to a different height. Also, when I am standing and waiting for a page to load, I have an ability to do some squats and/or exercises for strength or to get the blood moving. I may also do a little bit of stretching. Be careful if you’re doing these things though because I have found that too frequent stretching causes additional increased pain for me later on in the day or evening.

Monitor riser. The riser provides options about how high the monitor is so I am able to decide which position is best for my neck. At this time, I am using a board game as the riser for my laptop, which is on top of the standing desk. You could also use a book or two to lift your monitor to the appropriate height. Typically, your monitor should be a full arm length away from your body (18-20”) and the top of the screen is at or below eye level so the user can read it without bending their head or neck down/back. If multiple monitors are used, the position of the primary monitor is directly in front of the user and the other monitors are directly beside it. If time is split evenly between monitors, they are next to each other within a comfortable viewing angle with minimal head movement. A laptop is typically impossible to utilize ergonomically as your eye level is not at the top of the screen unless one operates a wireless keyboard and the laptop is lifted to the appropriate height.

Wireless, ergonomic keyboard. I have a Logitech K350 2.4Ghz Wireless Keyboard. This wireless ergonomic keyboard allows me to place the keyboard anywhere I need to so my hands, wrists, and neck are in a neutral straight alignment with my elbows flexed to 90 degrees and held close to my body. It is imperative everyone avoids straining joints or causing overuse injuries which could lead to tendonitis or other additional problems.

Mice. It is important to have a good mouse and to also have another mouse available for use as a backup when the good mouse becomes too repetitive and causes increased pain. I have the Logitech M570 Mouse. It has a tracking ball which I can navigate the screen by using my thumb. There are days though the rolling ball hurts my thumb, and then on those days I will secure tape to my thumb to avoid additional pain. It appears very helpful for me to have the option of using a regular mouse or this one with the rolling ball. The mouse or track ball should be located right next to the keyboard so it can be operated without reaching. Frequent position changes are not only important but necessary when dealing with EDS and/or persistent pain.

Foot stool. I keep a foot stool under my desk so I am able to shift positions more often. I could place both feet on it if I am sitting and when standing, I can put one foot on it and if I wanted to, I could even sit on it if I needed to. The point is, the foot stool provides options which allow me greater ability to continue working.

Proper lighting. Avoid glare from windows and lights. LED and fluorescent lights appear to bother my eyes causing headaches. I have two small lamps on my desk with 40 and 60 watt incandescent bulbs. This provides me the option of adjusting the lights in my space to avoid headaches. I also have a few big windows in my home office and the window treatments allow me to have as much or as little natural light in my space as I want.

Talk to text software. On my computer I have Dragon Software which allows me ability to quickly and easily type up long documents without the strain on my hands from typing as Dragon will type what I speak into the computer microphone. Luckily, I was able to get this software at a reduced price through my college. Other times when I need to write up a long document, I will use my email or Notes app on my iPhone and use the talk-to-text feature on there and then email the text to myself. For further workplace ergonomic information:

Personal Bracing Assists:

Clavicle Brace. The clavicle brace is a soft white brace prescribed by my physical therapist years ago which gently holds my shoulders back. While it appears to look like a vest, there is no material in the front. Therapists typically call this is a “Figure 8 Clavicle Brace.” This brace allows my upper extremity and upper back muscles the option to rest and relax while I am working. I don’t use this brace or any of my braces every day, but my braces provide OPTIONS for relief which I feel are absolutely necessary if you have neck, back or shoulder pain and work at a computer.

Neck Brace. This gives my neck muscles a rest on some days but again, while I don’t use it very often, some days I must and I have the option of wearing it for relief. Tape, ring splints, Gold’s Gym glove. I have many, many rolls of different kinds of body tape: white sports tape, Kinesio tape, and waterproof, spongy skin-colored sports tape. I use it to tape up the joints of my fingers and my thumb as I use my hands to type all day and it appears to help me reduce additional pain. Many people use Kinesio tape on their back to help remind them to maintain a good posture. Other people such as myself, use it to stimulate the sensory nerves on the skin which essentially “takes away” or distracts the nerves from sensing pain. It is not 100% fool proof but anything which could distract heightened pain nerves is a positive in my book!

Personal uplifting workplace sensory assists:

Essential Oils. For Christmas, my daughter Kailee presented me with a desktop essential oil diffuser. Some days I need to be reminded to breathe and the diffuser stimulates the senses and is a nice distraction to the ho-hum of daily activities. In fact, research indicates if we participate in deep breathing (6 repetitions, 6 times per day), this will encourage greater oxygen to our oxygen depleted nerves to promote decreased nerve pain. You could set reminders for this too throughout your day. With my newly acquired diffuser, I am reminded how the sense of smell is so very powerful. For example, like many others, I STILL recall the smell of my Grandmother’s house from back when I was a child. At the time I was about 5 years old, I really did not like the smell of her home at all. Yet now as my grandmother is no longer with us on Earth, when I get a whiff of this very same air freshener I previously disliked, I immediately have positive emotions and memories about being at her house and eating bacon, eggs, and biscuits and gravy at her 1970’s style dark brown wood kitchen table. I am also reminded of her little orange sports car, and the time my mom and I were brushing our teeth at Grandma’s bathroom sink and I remember how my mom was watching me in the mirror and when I spit the toothpaste into the sink, mom spit onto the floor. We laughed and laughed and laughed and even now it makes me happy and brings me positive feelings. Our sense of smell is strong enough to cause these positive associations made in an instant – with zero effort or control – from a single whiff of a particular scent. In fact, the sense of smell is very strongly correlated to feelings and emotions. Therefore, if you have a scent that has positive associations for you, it can actually help you a little with pain by triggering “feel good” hormones and memory associations. I also believe we should be careful utilizing fragrances or essential oils at times of high pain or a bad day because we may risk creating a negative association with the scent.

Music. Another pain diversion is music which I like to include during my workday. I find music is not only quite relaxing, it most definitely provides further distraction from the pain through the auditory sense of hearing!

Photos. Our sense of sight provides additional distraction and helps us to focus on the positive. On the side of my desk I have photos of family members, friends, and persons with EDS who have passed. This collections of photos are here as motivation to keep going and reminding me of my life’s purpose – which is to help others who are also suffering so they may find answers and solutions to live their life to the fullest despite pain and limitations.

Tokens. Within my eyesight at my desk, I also have notes from friends and other little uplifting items which automatically recreate positive feelings. Again, this helps reproduce positive emotions and associations throughout the day with merely a brief view of the tokens. My favorite item is a yellow coffee cup I painted with my kids at a local painting/craft shop about five years ago. I remember the day well! I went with my children and what fun we had just hanging out, talking, laughing while we were painting. As my late mother LOVED the color yellow because it reminded her of sunshine and smiley faces, I just had to choose yellow. I also painted my children’s names on the cup because…well, they are my world!

Incorporate building strength and endurance because… why not?

Under Desk Treadmill. Recently, I purchased a treadmill that goes under my desk and I LOVE it. It is the BEST $425 I have ever spent in my entire life and this included shipping and delivery straight to my house! (Unfortunately, it looks like the price has gone up to $459 now but it is worth every penny.) I have walked anywhere from two to four miles every day since it was set up in my workplace at home. The circulation and other health benefits are endless. Even if a person could only walk 1/4 of a mile, this is better than no walking at all. I do realize while this is not an option for everybody such as those who have difficulty walking, those who are able to my find it is a wonderful tool.

Ankle weights. At times, I wear ankle weights on my wrists when I am feeling stronger because hey, it can’t hurt to build some more muscle! Please be aware, this is for a limited time though because I too need to avoid overuse injuries. 3 -5- 10 pound dumbbells. The dumbbells are helpful to have at my desk so if I need a break and am having a good day with increased strength, I am then able to do a few bicep, tricep, or deltoid exercises. Again, we must avoid overuse injuries though so please listen to your body.


Here is a photo of my at home workstation. I work here up to 70 hours per week between my two jobs. I hope that these tips and hints are even slightly beneficial to you. In the comment section, please tell me what other tips and tricks you have that allow you to work or attend school on a regular basis.

As a person who has chronic pain, this list was created with the help of members of the group Ehlers Danlos & Joint Hypermobility on Facebook because I thought it would be helpful to have an easy, one page resource to refer to when my mind was consumed by pain, making me unable to think straight. I even printed a copy for my family to refer to so that they could help me after surgery. Here is the pdf that I use at home.

The way that I think about pain relief is how Dr. Pocinki explained it at the EDS International Consortium in 2016:  He said that if you do one thing that takes away ten percent of your pain, that is good, and if you do five things that each relieve ten percent – now you’re at fifty percent pain relief! I have found this to be true and a helpful perspective to have. I believe it is important to try many different things at one time and to not rely on just one.

***Always check with your doctor. This list is not intended to replace medical advice and is solely a compilation of opinions about things that others have tried for themselves.***
  1. “Epsom salt bath (2 cups Epsom salt, 1 cup baking soda for 45 minutes). Since magnesium is best absorbed through the skin, this helps achy muscles. If you cannot take a bath, soaking your feet in a foot bath with Epsom Salt will also work.”
  2. “Heat and/or ice. One or the other, or alternating.”
  3. “I’m always distracting myself from my pain since I’m no longer taking pain meds.”
  4. Self-hypnosis – Find more information on Alicia Cramer’s Facebook Page. 
  5. “Compile a list of books you want to read. The social website Goodreads you can find your friends and family and find out what they like.” A different member adds “I keep a list of books I want to read on my phone, so when I go to the library, I can be in and out, always have a book to read!”
  6. “YouTube video for  Weil’s 4-7-8 Breathing exercise to help counteract the body’s fight or flight response.”
  7. Prayer
  8. H. says “benadryl can curb panic attacks and relax you (can also put you to sleep of course).
  9. “I also keep lavender spray near my bed, and a sleep Febreeze air thingy too.”
  10. “Nice smelling hand cream by my bed.”
  11. “My TENS unithas been a godsend sometimes for all types of pain. I only wish it weren’t dangerous to use on certain body parts (head / chest) otherwise I’d use it everywhere.”
  12. “Natural anti-inflammatories like Arnica — Arnica Montana.”
  13. Biofeedback — hand warming has been amazing both for reducing stress and decreasing pain. Used to be that one could get a cheap indoor / outdoor thermometer and just use the outdoor probe in the fingers to track it. Sadly I haven’t been able to find one in the stores for several years, but they still sell biofeedback thermometers for this.”
  14. B.W. says “Ucla also has great (FREE) MP3 downloads of mindfulness tracks, they have a whole university program on it”
  15. “Tennis balls for myofascial back pain — a cheaper alternative for back knots for people who are single like me, or for those whose partners either suck at backrubs or work too much or for whatever reason aren’t able to help out. 2 tennis balls properly placed lying on a soft surface like a bed or very plush carpet can really do great for trigger points.” To get the back, put the tennis ball in a pillowcase and lean against a wall.
  16. “Taking magnesium can also be helpful, potassium — sometimes we drink a lot water, and don’t have the electrolytes or other things we need to absorb it. Making sure that we have more than just water in the system.” Another member adds, “Coconut water and Gatorade have electrolytes. Be careful with Coconut water if you have high potassium though.”
  17. “Breathing. Deep breathing can do a lot, and as we get stressed we tend to take shorter breaths and deplete our oxygen. Just 10 deep breaths can help counteract this.”
  18. “The word “nothing” repeated to clear my mind.”
  19. M. says “I’ve been listening to some subliminal message on YouTube about ‘healing’ and it helps me relax and eventually fall asleep. Now I don’t know if this will help me when I’m in the worst of my pain but it’s helped some. The messages are about believing your body is healthy, feeling good, etc. Here is another one.
  20. “Power posing! If you don’t do this already, just 2 minutes can change your cortisol (and testosterone) which can both change your stress and pain.”
  21. “Although easier said than done — not isolating. I always do this when my pain gets bad, and I know it makes things worse. It can be scary because people can lack understanding and can be rejecting when we most need empathy (or they can be condescending with sympathy, rather than empathy). I think that groups like this might be able to help, though, because there might be people who have been there. I think reaching out to someone, anyone, can be helpful.
  22. “Of course we all probably know that there is pain and there are times where it feels like (or there literally is) nothing that’s going to fix it or work enough. And that sucks. But I think hope – having hope is the most important thing.”
  23. “For me getting diagnosed with EDS was really important and having validation. So…hope. Music (for me), love, and letting ourselves live on those days when we feel well enough to do so.”
  24. “Making sure we don’t lose sight of those things that make us us.”
  25. “Remembering we are more than just a diagnosis.”
  26. R. says “What I find interesting is that when my pain tries to take me over from head to toe…oddly enough, my ph balance is off. Prylosac (sp) is good. Weird but works, or h202 therapy. Just a spray for under your tongue.”
  27. K. says “The nerves that perceive pain also feel tickles, joy, sadness. You can,only hold one emotion at a time. Choose JOY!”
  28. W. says, “Distraction. Find a movie that makes you laugh till it hurts or scares the heck out of you, you’ll forget about lots of the pain.”
  29. T. K. says: Watch Why Breathwork Matters by Andrew Weil.  Breathwork is a free and easy practice that can significantly benefit your health. Dr. Weil discusses..Vitamins! Vitamin C helps synthesize collagen, Vitamin D helps with body aches and depression especially in the winter, Magnesium and potassium help muscles aches and spasms.”
  30. B.T. says “permission to rest. One thing that sometimes helps me, often helps me, is to lie down and listen to myself breathe. Focusing on my breath as it goes in and out can redirect your thinking away from the pain. It does take a little practice, but it cannot hurt.”
  31. A. says “when I’m in pain I focus on the idea that pain isn’t the worst thing in the world. It’s a thing, and it’s distracting, but I’ve been through worse. This can lead me to overdo it, so be careful, but I suppose you would call it “meditating on the pain” and I believe that has been shown to be effective. It involves deep breathing, and that’s helpful as well. It also distracts me from blaming myself, which is very helpful. Eating right/ electrolytes and water are helpful but if I mess it up I’m very hard on myself, so that’s not a go-to when I’m already beat up.”
  32. T. K. says “app on my phone with binaural beats. Very relaxing. Anything that can help you focus on something other than ‘tactile’ sense can help relieve pain.”
  33. “I put on music of my pre-teens and teens yesterday… A time when I definitely felt better. It was energizing as it woke up that part of my brain when I was singing and dancing and having fun in my less painful years. I haven’t put my list together but you are all doing a great job with the variety of ideas.”
  34. Essential oils
  35. “I play multiple games of Words With Friends, and several other games to keep my brain busy and occupied.”
  36. “Drink hot tea and honey to relax.”
In case you missed it, here is the printable version.  

I am sure that there are many other things that can help relieve pain that did not make it on this list. Some of the more obvious ones were left off because those are things that I try to do on a daily basis anyways, such as consuming a nutrient rich diet, and getting adequate sleep and exercise.

Do you have something that you do for your pain that would be willing to share? Please post it in the comments section and we may add it to the list permanently.

Disclaimer: EDS Wisconsin, Inc. is not a health care provider and does not provide medical advice or treatment. Information provided by EDS Wisconsin is not a replacement for care from a doctor or other health care provider. Please talk with your health care provider about your personal diagnosis & treatment options. All information is for educational purposes only and is not a substitution for medical care or advice. 

Together we are stronger!