News

Thank you for supporting EDS Wisconsin in whatever way you can–and there are many. Your support through monetary contributions, event attendance, social media presence, supporting patients through mentorship and listening, following our blog, and even just by having an awareness of our experience with EDS has allowed EDS Wisconsin to make an impact in 2018.

We wanted to let you know what EDS Wisconsin achieved as a result of YOUR generous contributions and unwavering support.

Of all the events that took place in 2018, we were most thrilled to hold the First Annual Meagan’s HOPE Memorial Walk for Suicide Prevention and EDS Awareness. This event had 186 participants and for an event in its first year, we could not believe we were so blessed to have this many people in attendance.

One of the most important tools and major hurdles for EDS patients is genetic testing. In 2018, we developed a relationship with Director Christina Zaleski and Dr. Juan Dong at PreventionGenetics. We were able to tour their state-of-the -art facility, and work with them to help make their new 45-gene panel available to more patients! Afterwards, we had the tools  to help patients get the testing they need.

We hosted over FORTY support groups for patients with EDS and related conditions throughout Wisconsin – in Wausau, Milwaukee, Madison, LaCrosse, and Appleton/Green Bay. These groups and the support they provide continue to grow and help individuals in need. EDS Wisconsin also provides online support group meetings for those who live outside these areas or struggle to leave their homes. We have also connected kids and teens by having TWO support groups for them, something we are thankful we will be able to continue thanks to the ongoing support and financial contributions of our volunteers, sponsors and donors! These support groups are so important as the  feedback we received showed an overwhelming majority felt they had ZERO support prior to attending our support group meetings. 

EDS Wisconsin  strives to provide education that address the specific needs of our community. Since our inception, we have hosted and/or participated in :

  • 5 Tips for Managing Persistent Pain with Dr Linda S Bluestein, MD
  • Managing Your Pain with Dr Linda S. Bluestein, MD
  • Conquering Appointment Anxiety for Medically Complex Patients
  • Frequently Asked Questions on Genetic Testing with PreventionGenetics
  • Trivia Challenge 2018
  • Assisted the Chicago Support Group with educating medical students at the University of Illinois – Chicago
  • “My Personal Experience with Mast Cell Activation Syndrome” (available on YouTube)
  • How to Make a Medical Binder with Backpack Health
  • How to Make May EDS Awareness Month (available on YouTube).

Both Meagan’s Walk and the 2019 Trivia Challenge are right around the corner. These incredible fundraising events Strengthen Connections within our community, while providing the valuable financial resources and support we need to keep this organization on track to achieve its vision of a better Wisconsin, where EDS and related conditions are better understood, treated, and supported!

Your contributions have made it possible for us to provide support group print materials and supplies, support group leader training, supplemental grants for 2 children and 3 adults to attend conferences related to pain and EDS, have provided food to a family where both parents had surgery within a week of each other – the second one was due to an accident. We helped one patient pay for medication when it would have otherwise been impossible, improving quality of life for a member of our EDS family.

Looking forward, we are developing a support group leader training and education program because we believe it is so important to have quality, support groups in as many areas as possible, and that our support group leaders also need to receive the support they need.

We have begun working on a program to provide education about EDS and related conditions to medical professionals. This program will be piloted in the Fox Valley area in honor of our fallen member Lisa Klatkiewicz. Find out more about this initiative at Meagan’s Walk 2019

We will continue to regularly feature blog posts by Stephanie Vander Pas who shares not only about EDS itself, but about her experiences and events that connect us all. Stephanie’s candid writing provides readers with an insight into what it is like to be living with EDS, at the same time her words build strong, human connections, even with those who do not have EDS. Thank you Stephanie for sharing our thoughts and feelings, and for being our voice.

We are so excited to be working with over 70 amazing, dedicated, passionate and motivated volunteers who take valuable time out of their lives to help progress the mission and vision of EDS Wisconsin! When you see or talk to one of our volunteers, make sure you tell them thank you. Many of our volunteers also live with EDS which makes volunteering especially challenging sometimes. As a result, EDS Wisconsin is implementing a Buddy System to ensure that our Volunteers get the support that they need.

We have an incredible amount of gratitude to the medical professionals who have learned about EDS themselves and are educating both patients and peers as we move toward a future with improved quality of life for EDS patients--or maybe even a cure. These medical professionals are incredible and we are so thankful to know and work with them.

The mission of EDS Wisconsin is to provide support, resources and education to both patients AND medical providers. Our generous supporters and volunteers make all of this possible. We firmly believe our work will continue to make all goals achievable and contribute to the overall improvement of living with EDS and related conditions in Wisconsin.

From the very bottom of our hearts, thank you for your support of all we do as we work to improve peoples lives daily.

Tammy, Stephanie, & The Entire EDS Wisconsin Team

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.

Karina, a woman with short, brown hair and a pink flower in her hair smiles slightly. She is wearing big, black glasses and a red jacket

When I became acutely ill in 2010 with symptoms related to cervical spine instability, I fell into a big hole and didn’t quite know who I was anymore. I had to give up my job in research and couldn’t do most of the things I loved. For a long time, I struggled to find a new sense in life, something that gives me hope and purpose. 

And then ’We Are Visible’ happened! When I started to study in a journalism degree in Edinburgh, Scotland, I immediately knew that I wanted to produce a documentary film for my MA thesis. Even though I had never filmed before and didn’t know much about filmmaking, I felt that it would work out if I just put all my heart in it. And I certainly did! 

With my film ’We Are Visible,’ I wanted to give a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. I am part of this community as well, and therefore  see it as my responsibility as a filmmaker and journalist to change misconceptions surrounding invisibly disabled people. 

”How can you be sick if you look totally fine?” is one of many hurtful comments people in my community have to hear on a daily basis because you can’t see their disability from the outside. Journalists and filmmakers alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful way. 

’We Are Visible’ shows people living with the invisible condition Ehlers-Danlos syndrome all around the globe and therefore conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives.

’We Are Visible’ wants for the non-disabled audience of this film to understand more about the invisible condition, and for disabled viewers to be able to relate to people with a similar disability because there is so much more that unites than what separates us! But most importantly, it emphasizes not only the challenges we face every day but also the incredible strength every person with EDS has in order to cope with all those obstacles.

 

Pencil like drawings of all the faces of the main contributors of We Are Visible.

We Are Visible – Open Your Eyes

 

Details about the Film

SYNOPSIS:

“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

We Are Visible

SCREENINGS of the film:

In January, there will be screenings in Rhode Island, Colorado, and a larger one in Orange, California. If you want to join any of those screenings, have a look at the Event page: https://we-are-visible-film.com/events/

Duration: 

69 minutes

Director, Producer, Editor

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years. As a laboratory technician, she worked in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness and produced articles about medicine, science, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking.

More about the filmmaker: www.karina-sturm.com 

Trailers

Trailer 1

https://vimeo.com/349770539

Trailer 2

https://vimeo.com/349770866

Tailer 3

https://vimeo.com/348046371

 

Find out more:

IMDb

https://www.imdb.com/title/tt11100592

Official Website:

https://we-are-visible-film.com

Facebook:

https://www.facebook.com/karinasturm86/

 

Flyer for 'We Are Visible' featuring black and white pictures of the main contributors, all women and two children, as well as film award laurels, and the synopsis of the film.

We Are Visible – A film about people living with Ehlers-Danlos syndrome

A great friend I met through EDS Wisconsin asked me today if I’ve ever written about how it feels to never really “be able” to have an emergency. If you’re reading this and you don’t have EDS, you probably are wondering what we mean. For example, if we had a gaping head wound and were taken by ambulance to the local emergency room, of course we would be having an emergency—so how exactly can we say we are not “able” to have an emergency?

Here’s the thing about life with a condition like EDS. A normal day for us can often include symptoms severe enough, if we were healthy, someone from our family would probably put us in the backseat of a car surrounded by pillows and take us to the hospital for immediate attention. Just yesterday, as I was playing with my two dogs, who you both know I love as much as just about anything in the world, I dislocated a shoulder. I heard it before I felt it, because I have grown so accustomed to this particular joint moving. I went to my bathroom and moved my body around enough to put it as close to the right location as I could. I had already taken the dose of painkillers I was allowed to take for the afternoon with my NSAIDS, so aside from the bag of frozen mixed vegetables I grabbed from the freezer for some icing, there really was not anything else I was able to do.

They’re skeptical of photos before cake, but they’re still worth a rough game of fetch.

Here is what would have happened had I gone to the emergency room. First, I would have had to explain to every person who came into the room that I have EDS, usually spelling it out for them. Last time I was in the emergency room, the DOCTOR (yes, a physician, an MD), said to me, “You have Maylers-Danyos Syndrome? That’s a new one. I’ve never heard of that.” I was in tremendous pain from what turned out to be a severe kidney infection (which took two more trips to the ER to get diagnosed, but I digress), so I thought perhaps in a state of pain, I hadn’t annunciated well. I annunciated and spelled out, “E-H-L-E-R-S…” and so on. He still had no idea what I was talking about. Next, they would have taken an x-ray of my shoulder. By this point, I would have relocated it well enough for it not to show on the x-ray. Because they’ve never heard of EDS, they would tell me it is unlikely I even dislocated it in the first place. They would offer me a higher dose of ibuprofen (yes, no actual painkillers) and advise me I may have pulled some muscles in the area. Usually at this point they say something like, “If you have this rare condition, you are probably seeing a specialist, so if you have a problem, follow up with them.” It has usually been hours by now, because I was triaged long after the screaming baby and the people with conditions they have heard of. My husband has drained his phone battery from playing games and trying to entertain me through the pain. Then, we’ll get another bill from another trip to another doctor who didn’t help me.

The last time I was in the ER multiple times, it took a routine visit to my pain management specialist for him to realize how truly sick I was. By this point, my fever was maintaining at 103-104 for more than  three weeks, but I had been given oral antibiotics with no culture for a kidney infection on my second trip after being told on my first visit that my extreme abdominal pain was caused by an ovarian cyst (that had not burst) smaller than the width of a dime. I was no longer in my hometown and in a system more equipped to handle my condition, but I only felt safe, because he called the ER. He walked them through both of the conditions I have. Aside from EDS, I have a rare metabolic bone disorder called Hypophosphatasia that leaves me incredibly susceptible to infection due to poor creation of white blood cells. Without an appropriate culture of my infection, it was extremely unlikely the antibiotics would be effective. I typically get 10-15 bacterial infections each year requiring antibiotics. My doctor told me if I did not agree to go to the ER, he would call the ambulance to take me because I was tachycardic from this infection and fever. I required significant amounts of fluids from dehydration and IV antibiotics, in addition to beginning a course of oral antibiotics to follow up on the infection. Without those specific instructions from a physician, it is likely I would have had the same experience. I am blessed to be articulate and skilled at advocating for myself and yet, I still do not have the same experiences in emergency rooms and urgent care as those without my conditions, because doctors simply are unprepared to handle someone as complex as me.

This post is for every EDS patient who has ever had a severe injury and decided a trip to the ER would be a waste of time and money for no reason but the lack of understanding. This post is a reminder why so many of us are fighting to educate physicians about EDS. This is for the parents sitting next to their children in those emergency rooms who do not yet have a diagnosis who end up separated from their babies, so someone can ask if they feel safe at home. It is better now than it was when I was a child and I believe the work we are doing today will mean it will be even better when your children are adults. This doesn’t make it fair or easy, but it does make the effort worth it.

You are not alone. We are all in this together.

I am a day late, but hopefully still worth the read. We have just wrapped the end of EDS Awareness Month and throughout it, so many wonderful things happened–especially as EDS Wisconsin launched #KnowEDS, an opportunity for us to educate our communities, the state, the country, and maybe even the world on the Ehlers-Danlos syndromes. I’m not here to write about the campaign, though, even though it is the most important thing we are doing right now. I am here to write about all of the thank you messages we should be sending after EDS Awareness Month. These are the people who have made and will continue to make living with EDS better and in particularly severe cases, POSSIBLE.

  • To our parents: thank you for raising children fighting a battle you often did not even have a name for. Thank you for taking us to appointment after appointment and never giving up on a diagnosis. Thank you for staying up with us when we were crying from the pain our doctors told you were just growing pains even when we sobbed a lot more than you believed growing pains should cause. Thank you for never giving up on us. Thank you for believing we can do anything even with challenges and for showing up to all the events to raise awareness. Thank you for telling your friends about EDS and explaining to the family members who do not understand why your child or children is in constant pain, telling them it is real, making them believe us. We would not and could not be here without you.

    My Mom

  • To those EDS patients we have lost: I have already written about your losses and what they mean to us, how they affect us all, but I want to reiterate what that means. You are so much of the reason so many of us are working as hard as we are. We will take your loss and use it for education. You are not truly lost, because your message is living on through all of us. We are carrying you in our hearts and through our words. You were brave and strong in life and your educational message makes other brave and strong in their lives.
  • To the doctors who fight for us: Thank you for believing us. Thank you for learning about things if you do not already know when we present with symptoms. Thank you for talking to your colleagues and educating them about a condition that makes our lives incredibly challenging. Your fight for proper medication, proper treatment, and proper access to everything we need–that gives us hope–and for some of us, hope is all we have.
  • To our non-EDS friends: Thank you for being there even when you don’t understand. Thank you for trying to understand. Thank you for showing up. Thank you for understanding when we cancel plans or relocating those plans so we can stay on the couch. We need you so much. Thank you for not being upset when we are sometimes envious you don’t have EDS. Thank for knowing that doesn’t mean we don’t love you or need you. It just means we are human and sometimes we wish we had a different life without the stresses we have and you love us enough not to hate us for that–and that makes you incredible.
  • To our EDS activists: Thank you for beginning this revolution before some of us even knew we had EDS. You have changed medicine. You have changed lives. You have inspired us to write and speak and lead and educate.
  • To the children with EDS: Thank you for being brave. You are so strong. You cannot possibly know how strong you are. We all do, because we were you and now when we look back, we realize what it took to survive our childhood. It affected our mental health to be in pain all the time. It affected us not to be able to do what our friends did. Please know that you are very fortunate to have a diagnosis and it will change your entire life versus what happened to us. It won’t cure you. You will still struggle and that is still scary, but your monster has a name and your parents are educated allies we wish we could have had. When you need us, any of us, any time, we are here. We will listen. You are not alone. Not ever.

    EDS Kids

  • To our therapists: Thank you for reminding us that even though our pain is real, it affects our mental health. Mental health is as important as physical health. Thank you for helping us know that. I will never forget when I told my therapist I worried my pain was all in my head and he said “Of course it is. That’s where you feel pain. That doesn’t make it fake.” You are a critical part of our care team. We need you as much as we need any other physician.
  • To our spouses and partners: Thank you for never seeing us as a list of conditions. Thank you for loving who we are as human beings. We need you to help us fight this battle. Most of us didn’t know if we would ever find someone who could handle what was happening to our bodies. When we did, it was life-changing. You are sometimes in more pain than us because you love us so much, our pain makes you hurt. We know you hurt. We know you wish you could move our pain to you and that means a lot more than you know. Thank you for wishing that. Thank you for being that. You are the strength we need on the days we do not have it.
  • To every EDS patient: Thank you for being you and being strong. Remember how many people love and support you. Remember there is hope. Remember you are not alone. Remember so many of us are fighting this battle by your side and we will be there to get you help when or if you need it. Thank you for opening yourself enough to share your struggles. That alone makes you far stronger than you can even imagine. Thank you for being a warrior. We are proud of you.

I am sure there are so many more people I could thank here, but for now, these are the folks I think most important to acknowledge. Please know what it means for you to be in our lives. We love and appreciate you all.

We are strong, but only because we do not fight alone.

 

It’s funny whenever I find myself taking a break from writing, it’s usually because I’m doing the same thing to blog readers as I do to those in my own life–pretending everything is going so well I don’t have anything to say. If any of you know me in real life, the idea of me having nothing to say is, in itself, hilarious. Yet, here I sit, at my desk, in my wheelchair, a dog on my lap, a TENS machine at its highest power attached to my back and I’m still not really sure how to write this blog post.

Essex likes to be cozy

In the world of chronic illness and chronic pain, we all learn to tell healthy and able-bodied people we’re doing “fine” pretty much all the time. We do this for a variety of reasons, including, but not limited to:

  • Our medical conditions are complicated and explaining what is going on would take longer than anyone wants to spend on hearing how we’re doing
  • People generally don’t want to hear when things are getting worse
  • Pity isn’t something we thrive on and we know at some point, it runs out
  • Many people just simply aren’t sure how to react to hearing how we’re doing

I’ve been telling even myself I’m “fine” for the better part of the last several months, even as I fought off a severe infection that required multiple emergency room visits in which physicians did not understand my condition and in which I was time and time again not given the necessary antibiotics to fight the infection. I woke up one morning with a fever of 104 degrees, feeling like I was naked on an iceberg, and shaking so hard I couldn’t even type out a message on my phone. That day was our second trip to the emergency room. Even then, I didn’t get IV antibiotics.

I didn’t get them until the doctor who generally treats the pain caused by my EDS saw me for a regular appointment and realized how incredibly sick I still was even after 9 days on antibiotics. I was tachycardic. I had a fever. My kidneys were so infected the pain in my back was far more severe than even on a normal day. As he looked me over, he called the emergency room down the street and instructed them on my condition, telling them exactly how serious this was.

He also looked at all the blood work from all my previous ER trips…and then from all my trips to all the doctors over the last six years, which is when he noticed a commonality. I had alarmingly low levels of a necessary enzyme in my blood consistently for six years. These levels had been flagged in my blood work every time it had been drawn for all these years and are indicative of a condition found in 1 in 100,000-300,000 people. It is a metabolic bone disorder that cause almost all of the things he and I had been trying to figure out for years. You see, I have incredibly curved long bones in my legs. I developed scoliosis in adulthood. I lost my baby teeth before preschool. My pain responds to almost nothing. These are all MAJOR indicators of Hypophosphotasia, marked by these clinical symptoms, and below normal levels of alkaline phosphotase in the blood. He was the first doctor to notice this. Normally, in his words, because it is even less known than EDS, they look only for extremely high levels of ALP, a marker for kidney failure.

He immediately consulted genetics as I was sent to the emergency room for treatment for the infection, which is now finally gone. I received a message the following Sunday night from him (seriously, he is THAT dedicated a physician) letting me know genetics agreed with him that it is extremely likely I have this condition and would be contacting me. Genetics says it is either this condition or another metabolic bone disorder, but by some stroke of luck, a company offers free testing for this condition, so currently, my spit is at a lab after my husband mailed it for me, because I was just too anxious.

How have I handled all of this? Well, I stopped using my mobility aids and have been acting like I’m a completely healthy and able-bodied person through incredible amounts of pain. I have tried to convince myself it’s not possible I have another condition doctors missed for years, especially one that was IN MY BLOODWORK by acting healthy and “fine.” That caught up to me today, in the middle of a grocery store aisle when I dropped something on the ground and realized I couldn’t bend far enough to pick it up. By the time I got home, I could barely leave the couch and had to use my wheelchair the rest of the day, mostly through tears and anger.

I’ve resolved to accept my reality no matter what it is. In fact, it could be good news to know exactly what is going on with my body and why I have had these struggles that do not necessarily line up specifically with EDS. I’ve also resolved to stop saying I’m fine when I’m not. I’ve resolved to stop trying to convince myself I’m fine when I’m not.

It’s a REALLY good idea to work on your mindset. You can work towards a positive attitude. You cannot trick your body in to having different DNA than it does. Sometimes, like I have written before, accepting your limits is okay. Sometimes, when someone asks how you are doing, it’s okay to say, “I’m in a lot of pain today, but my husband and I had a great dinner date last night” or “Thank you so much for asking; I’ve been having a really hard time with my health lately and I need someone to talk to.”

So, I’m not fine, but by accepting that, I think I will be much sooner.

I post a lot online. For some people, it’s probably annoying or way too much. For others who share my condition or have family members who share my condition, it’s probably comfort. For others, they probably just don’t feel much of anything about it. Honestly, I don’t much care where you fall on that spectrum–and I don’t mean that in a rude way. I do it for two groups of people: myself and the people who need the words I write. Everyone else knows how to avoid reading them.

I wear makeup to the emergency room…I don’t know. Sue me.

I was in the hospital most of yesterday. It’s not the first time that’s ever happened. My husband couldn’t be there with me, because he had to be at work. I have some complicated issues with my ovaries and uterus that are causing intense pain and major symptoms in my life that frankly, none of you want to hear about.

Here’s the problem, though. I hear this all the time. I get told this all the time. It’s one of the comments I read the most on my Instagram posts and blog and other internet formats. “How are you ALWAYS happy and positive?”

I am absolutely, in no uncertain terms ALWAYS happy or positive. In fact, if you asked my husband, he would probably laugh so hard at you about that he would end up on the floor. Not only am I just NOT ALWAYS happy, I have clinical depression and severe anxiety. I am medicated for both and despite medication, I still feel them. I work with a psychiatrist and I talk about how I feel and I have yet to make it through a therapy session without crying and saying “not fair” at least once.

So, how am I smiling frequently? Are my positive posts lies? Am I always sad and crying?

No, that’s not the case either. I genuinely believe I was put on this earth with this chronic, incurable condition to help other people. I have a positive attitude about it a lot of the time. I have moments when I scream and yell and cry and use words that are not appropriate for a blog or for children…but I also have moments when I read the words other people comment on the work I’ve done with EDS Wisconsin or the posts I’ve done myself and I remember what I can do with the situation I’m in. I remember there are young kids looking at me and thinking about what’s going to happen to them when they get older and I hope what they’re thinking is that it’s going to be okay. I hope they notice that I have a wonderful husband and a supportive family and two adorable dogs and I served in elected office starting when I was only 20 years old and they realize that even if they’re sick, they can still have fulfilling life. I hope they forgive themselves for the moments they are angry at the world for giving them EDS but also find joy in their uniqueness.

I mean, look at her face. She can brighten any day.

I’m different from most other people. I’m different not just because I’m sick. I’m different because I can write and I know every word to every Taylor Swift song ever written and I can paint tiny artwork on my fingernails. I’m different because my mother tells me I’m the only person she’s ever known who’s actually uniquely talented at coloring. I’m different because I have a tattoo of my dog’s crazy big ears on my left shoulder and a tattoo in memory of my wonderful grandfather on my right wrist. I just also happen to have really crappy collagen that means I sometimes use a wheelchair or the most blinged-out crutches you have every seen.

I am not always positive. EDS is not even a little bit fair. I wouldn’t change my life for anything; I love who I am–and I can feel that way while also knowing I wouldn’t wish EDS on anyone else in the world. I may not always be positive, but I am positive I wouldn’t want to be anyone, but the Taylor Swift-loving, puppy-cuddling, has way too many bottles of nail polish person I am.

I’m just me. Positive, negative, me.

If you read this and if you are in my shoes, please remember what I always say about self-pity and sadness:

It’s okay to visit…as long as you don’t unpack and live there.

Together we are stronger!