News

Trigger Warning: Child Abuse, Sexual Abuse, Medical Trauma

Hello, everyone! I know it has been a very long time since I wrote to you here. One of these days, I will be able to tell you the entire story of why I haven’t been able to be as open to the world as I used to be. For now, I will tell you the vulnerability I have always cherished in writing was used to try to fight a battle I didn’t think could possibly hurt me more than EDS does. I didn’t expect what happened after, the publicity, the sudden move away from my home, and ultimately, some really severe PTSD I’m still not quite sure how to handle. For most of my life, I wanted people to know my name and to fight for what I believed in–until my name and fighting for what I believe in almost destroyed my life. I’m doing a lot better now than I had been. I have had a lot of help and support from a lot of people, many of them in this community–and I so appreciate the patience people have had with me as I have tried to navigate venturing back out into the public. My passion has never wavered, but my abilities and my needs have.

May is EDS Awareness Month, as most of you know. I posted a photo in my Snapchat story last night with the caption “Thanks, EDS” and giggled a little with my husband about it. Tammy (our wonderful leader) saw it this morning and mentioned I should share it with you for awareness this month. She was right. The picture is funny if you KNOW you have EDS. Your legs probably look like mine or at least they have looked like mine and they will again. It’s not so funny if you don’t know you have EDS and has the opportunity to educate a lot of people. So, here’s the photo:

Just a Regular EDS Night

I remember growing up and getting hurt many times. It seemed like I was spraining joints more often than I was taking spelling tests. The nearest ER was a frequent stop, so much so I think we had a running joke about a punch card for a free visit after ten stops. Back then, though, I was just a kid, covered in bruises, hurt again. I wasn’t diagnosed with EDS until March of 2016, when I was 25 years old. I always knew what was coming when we went for these visits. I would wait for the worst part. They would ask my mom to leave the room and then ask me questions to make sure I wasn’t being abused at home. Make no mistake about this: recognizing the signs of child abuse is an absolutely critical part of medical care. It was challenging for me because I am the victim of child molestation and I waited 11 years to come forward about it. When they wanted my mom to leave the room to ask me about whether or not she was safe, I was afraid they might figure out the other “thing” or take me away from the person who did keep me safe, the one who kept taking me to doctors no matter how far away the drive, no matter how many of them told her I was fine. I knew she was getting asked questions in the hallway. I knew they were looking for differences in our stories, keeping track of how many times I’d fallen off my bike. I remember even at 13 years old being confused about why she would bring me in covered in these bruises and asking for help if she were trying to hide something.

I wish my mom had known then what we know now and could have advocated for me. When my husband and I go to the ER now, which we still avoid but now only for a lack of knowledge about the more rare of my conditions, Hypophosphatasia, we are able to have them access my electronic medical records to see that I am a patient with Ehlers-Danlos Syndrome. My pain specialist makes himself available for calls about the condition in case they do have questions about the easy bruising. You see, I don’t know where one single one of these bruises came from. My husband is a VERY patient man who would never in a million years lay his hands on me, but I also could literally bump into him when walking across the living room and end up with one of them. I have bruised myself with one of the worst bruises I have ever seen from my own wheelchair, a device meant to limit injury to my person.

Why am I writing this now? I want people who might have legs that look like this to know what to ask their doctors. I want them to know the questions to ask that my mom didn’t know to ask and NOT for lack of trying. We had no idea what EDS was. More than that, though, I want doctors to know what else might cause someone to look like this. I want them to know it is so important to know the signs of abuse, but also to know how to test for conditions that might make me look like this from absolutely nothing abuse-related. I want them to understand this could be caused by the patient’s DNA and a bump into a kitchen counter. None of these bruises hurt when they happened or I would know where they came from.

Maybe the patient who is constantly in the ER with seemingly silly explanations for their injuries, like falling up the stairs (I can’t remember how many times I did that) and also with bruises on them like this also has stretchy skin, hypermobile joints, migraine headaches, and chronic pain. Maybe, that ER doctor could answer their questions or refer them to someone who can before they’re 25 years old and convinced they’re crazy. Maybe that child won’t be afraid about when their mom gets called into the hallway because their mom will already know to tell the physician that since the last visit, they saw another doctor and now they know the child has Ehlers-Danlos Syndrome, which is what is causing the easy bruising and susceptibility to injury–and the medical records will support that and eliminate the trauma of that fear.

The bruises aren’t fun,  but the bruises on our mental health from not knowing for so long are much worse. You can’t see collagen, but there are visible signs of the defective version.

Thank you again for your patience, support, and love. I am blessed to be in a community of people who support each other no matter what. I look forward to writing to you more again.

-Stephanie

PS: To brighten the mood after such a tough topic, here are cute photos of my dogs:

Essex “Boo Boo” Vander Paws

Aura Charlotte Vander Paws

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AUDITIONS: PRIVACY POLICY

 

  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 www.aboutads.info/consumers, and to opt-out of such ad networks’ and services’ advertising practices, go to www.aboutads.info/choices.

 

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 http://www.macromedia.com/support/documentation/en/flashplayer/help/settings_manager.html.. 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.

 

  1.   USE AND DISCLOSURE

 

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 www.aboutads.info, and to opt-out of such advertising networks’ and services’ advertising practices, go to www.aboutads.info/choices.

 

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.

 

  1.   SECURITY

 

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.

 

  1. USER ACCESS AND CONTROL

 

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

 

  1.   OTHER IMPORTANT INFORMATION

 

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.

Together we are stronger!