Fighting the Good Fight Against Ehlers-Danlos Syndrome & Dysautonomia

May is Ehlers-Danlos Awareness Month, so we interviewed Lara Bloom, Executive Director of The Ehlers-Danlos Society and Lauren Stiles, President of Dysautonomia International to ask them about Ehlers-Danlos and dysautonomia advocacy, research and collaborations between their organizations.

Q: When were you diagnosed with dysautonomia and Ehlers-Danlos (EDS)?
Lara: I was diagnosed at 24 with EDS and in 2007 with POTS.
Lauren: I was diagnosed with POTS in 2010 and while a few doctors suspected I had EDS hypermobility type, I didn’t meet the formal diagnostic criteria.  I fall somewhere on the spectrum in the new Hypermobility Spectrum Disorder category.

Q: What motivated you to begin advocating for your cause?
Lara: I went years without a diagnosis, being told I was a hypochondriac, that it was all in my head. When my diagnosis came it was a relief. I met another person with EDS for the first time in 2007 when my POTS was severe and I needed support, I went to the EDNF conference and thought how wonderful it would be to set up a UK charity that did the same.
Lauren: Like Lara and so many others in our patient community, I went through a period of prolonged misdiagnosis before we found out that I had POTS and an autoimmune disease (Sjogren’s syndrome) causing my debilitating symptoms.  Before I was properly diagnosed, I was told I was just doing this for attention from my husband because I didn’t have babies yet, among other ridiculous things.  I wanted to make sure no one else had to endure that torturous process, and I wanted to get the research done needed to provide better treatments for people with autonomic disorders.

Q: When did you start your advocacy work?
Lara: I started at EDS UK in January 2010.
Lauren: I started blogging as POTSgrrl in 2010 and founded Dysautonomia International in 2012.

Q: Is it difficult to balance your health and work?
Lara: Yes sometimes, but on the whole the more active and busy I am, the better I feel! Stillness for me, is pain. I like to keep as busy as my body allows, that differs most days but I like to try and win the battle as often as I can.
Lauren: Balancing health and work is challenging for people who are completely healthy, so, naturally, it’s going to be harder when you have a chronic illness. I know I would be able to get a lot more done if I wasn’t dealing with health issues. But sometimes when I’m feeling my most dreadful, it’s my passion for this advocacy work that keeps me going.

Q: What is the hardest part of advocating constantly?
Lara: Realising how far we still need to go. We are really at such an embryonic stage and we need to re-educate so many people. Sometimes the mountain to climb is exhausting. I try and not look up and just keep going, knowing that I am getting closer to the top with every small step.
Lauren: Choosing which advocacy front to focus on. We need advocacy in so many different areas… fundraising, research, physician education, patient and caregiver education, public awareness, educating federal and state elected officials and agencies, educating lawyers, judges and disability decision makers, advocating for students and workers to get the accommodations they need to thrive, improving insurance coverage for services our patient community needs, developing new dysautonomic clinics and training the doctors and staff needed to run those clinics and so much more. Our to do list is 10 miles long and there are only 24 hours in a day.

Q: Why do you think it’s important that organizations like Dysautonomia International and the Ehlers-Danlos Society work together?
Lara: Collaboration is everything. The EDS world is fragmented and I think this is holding us back. This is the main reason I wanted to start an international organisation. We are all fighting together in such similar missions, there is great quote by Mattie Stepanek  – “Unity is strength…. When there is teamwork and collaboration, wonderful things can be achieved”. I really believe this. The logo for our charity is the Zebra, a group of zebras together is called a dazzle. When everyone comes together, we can dazzle.
Lauren: It’s critical that we work together because our patient communities overlap so much. We can’t figure out autonomic disorders like POTS and OI until we figure out EDS, and we can’t figure out EDS until we figure out POTS and OI. About 33% of POTS patients have EDS, and about 80% of EDS hypermobility patients have either POTS or OI.  Each diagnosis is a clue to solving the other diagnosis. Lara and I are working to bring the EDS and dysautonomia researchers to the same table, literally, because we need them to learn from each other and work together on research projects seeking to understand the relationship(s) between EDS and dysautonomia.

Q: What plans do you have to work together?
Lara: I think it would be great to work on research and try to hold conferences together in the future.
Lauren: We have discussed holding a joint conference, which would be great. In the meanwhile, we are attending each other’s conferences. Lara and Dr. Clair Francomano will be presenting on EDS at Dysautonomia International’s conference this summer and meeting with dysautonomia researchers to discuss the importance of screening for EDS.  Lara invited me to participate in the Autonomic Working Group of the International Consortium that recently produced a journal article summarizing what we know to date about the relationship(s) between EDS and dysautonomia. This is an area that desperately needs more research.

Q: What is the value of working with other organizations?
Lara: Other minds, opinions and ambition coming together to make a difference. There is nothing more powerful than a patient advocate behind an organisation, it gets stuff done!!
Lauren: Since we both represent diverse communities of people from all over the world, it’s really helpful to see the different perspectives and experiences. Plus, we have different people in our networks of patients, caregivers, doctors, industry contacts, government contacts, etc. The more information sharing between our networks, the better for all of the patients we serve.

Q: What do you think the value of the patient community is?
Lara: They are our voices, our strength and hope. Everything we do is for our patient community and if we educate them correctly they are an excellent army fighting for our cause.
Lauren: I don’t think either us would be doing this if there weren’t strong EDS and dysautonomia patient communities.  I always tell people, if this awful misdiagnosis had just happened to me, I could have gotten over it and moved on with my life. But when I went online and saw literally tens of thousands of other people who had been treated the same way, I knew I had to do something about it.  Every patient that volunteers for our organization says the same thing, “I want to give back because I want to make sure no one else has to endure what I went through.” The first time I heard Lara lecture, that’s exactly what she said too. Dysautonomia and EDS patients have unspoken bonds with people who live across oceans, because we have a shared experience and shared goals of improving the way the medical community interacts with us.

Q: How do you hope to change the way dysautonomia and EDS are viewed/treated?
Lara: I would like both to receive the respect and recognition that deserve and need. I also want people to truly understand the multi-systemic nature of both of these conditions and for the research to be done to prove what we already know anecdotally.
Lauren: I want patients to be believed and treated with compassion. I want our concerns to be addressed with the best medical care currently available, in a timely manner, without having to fight tooth and nail every step of the way. I want more government, industry and charitable investment in research, so we can develop better treatments, and heaven forbid, a cure, for any of these conditions. Specifically on the research front, I would like to see more pathology studies trying to determine why EDS patients develop small fiber neuropathy. I think this will be critical in understanding the relationship(s) between EDS and dysautonomia.

Q: What is the most rewarding part of what you do?
Lara: As cliched as it sounds, it is making a difference. Whether that is with a medical professional at a conference through changing their perception of EDS, or inspiring a patient that EDS does not mean they can’t have a good quality of life. The most rewarding moment of my career so far was looking around the room at the international symposium in NYC and knowing that we had such amazing people dedicated to making a difference. The new nosology is something that is 20 years overdue and being part of making that happen was incredibly rewarding and gave me hope and renewed strength for our new global mission.
Lauren:  I love empowering young people to become their own best advocates.  Sometimes they just need little encouragement and direction, and then they blossom into a self-confident activist who can speak eloquently for themselves and their fellow patients. I also like getting invited to lecture at medical institutions like Harvard Medical School and the National Institutes of Health, because I know there are doctors in the room who will treat the next dysautonomia patient better because of what they learned. Mischievously, I also enjoy sending some of the more obnoxious doctors who misdiagnosed me invites to my lectures and copies of the journal articles I have published.

You can learn more about EDS and dysautonomia onThe Ehlers-Danlos Society and Dysautonomia International websites.

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