Increased awareness is helpful for those of us with EDS
When I was diagnosed, not many doctors even knew of this syndrome
I’ve been thinking lately how awareness of Ehlers-Danlos syndrome (EDS) has changed over the years. Growing up, I’d never heard of it. The first time I did was as an adult, when a doctor at Georgetown University, where I’d been sent to search for a diagnosis, told me he thought I probably had it. He referred me to the Cardiovascular Connective Tissue Disorder Clinic at Johns Hopkins University, where a few months later I received my official EDS diagnosis at the age of 22.
After that, I went years without meeting another person who has EDS. I always joked that if I had to have something, at least it was “fun” enough to be on the rare diseases list. It was a relief to have a name for the set of symptoms I’d been managing for as long as I could remember.
While most medical practitioners I met after my diagnosis still hadn’t heard of it — and those who had heard of it often hadn’t met a person with it; they only knew of it from medical texts. At least it was a starting point. I eventually found a physical therapist who’d never treated someone with EDS, but was willing to dive in and learn about it.
That therapist listened to me, and as we progressed, we adjusted my program along the way. I was also lucky to find a massage therapist who took the same approach. Between those two modalities, I finally started to get my pain levels under control — after spending my whole life not being entirely aware of how much pain I’d been in!
Finding my tribe
After that, I mostly carried on with my day-to-day life and never made any connections with other people who have EDS. Then a friend who works at Bionews, the parent company of this website, asked if I wanted to write a column for Ehlers-Danlos News. Sure, why not? Suddenly, I was connected with other people who manage issues similar to mine. I learned from them how EDS can manifest quite differently for each person. Still, we all do our best every day to minimize the effects it has on our daily lives.
Just hearing from other people with EDS was great for me. Then, a few years ago, I met someone who has EDS in person for the first time! It was great chatting with her and learning about her experiences, which were both similar to and different from my own. I’ve also discovered in the past few years that most practitioners have now heard of the disease, and some of them are even familiar with treating it.
Awareness about EDS has grown over the years, which in turn leads to more diagnoses. And that helps to create greater awareness in a snowball effect. Today, it’s not unusual for nonmedical people to also have heard of EDS, and some have even shared that they know someone who has it. Years ago, when I was diagnosed, I never could’ve imagined that would be the case.
I now know several people who have EDS, and I have access to an amazing online health community. I hope that despite our different experiences and levels of disease severity, simply knowing that others are out there who understand us will bring comfort, whether you’re a newly diagnosed patient or an expert at managing EDS. We’re all in this together!
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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Comments
margaret
I am a retired/disabled family physician finally diagnosed with hEDS after seeing daughter and grandkids working through my stuff, but worse, and a ct angiogram mentioning anyurism.....grandma had one. I think it may be related to metals.....
Emily
Hi Karen. I am 49 with a diagnosis of hEDS.
I was always told I had growing pains as a child and struggled though my teenage years with stretchy bandages from wrist to shoulder and ankle to thigh to support my joints and endless physio for flat feet and TMD.
At 26 my pelvis detached on both sides from my pubic bone during my first pregnancy and an orthopaedic surgeon diagnosed me with JHMS. My second pregnancy five years later with twins was not much better and at 37 a disc collapsed in my neck rendering loss of the use of my arms until specialist surgery took place with further surgery 20 months later. At each pregnancy and both spinal surgeries I haemorrhaged despite doctors reassuring me this would not be the case and finally got referred to a specialist unit for a hEDS diagnosis. I always appear to do the opposite the medical professions expects and the small number who have severe complications. This year I went to have knee reconstruction surgery and felt unheard and everyone ignored specialist EDS opinion I had sought to inform the knee surgeon and anaesthetist. I didn’t get my surgery as my femoral artery was cut through at the start of the surgery and veins taken out of my calf for bypass were unusual due to our tissue fragility. I have been left with permanent vascular and mobility issues that I am still adjusting my life to. God and my church have supported me through this process but more challenges are to come as I am about to have my job contract terminated for ill health and ongoing issues limit daily living. Five times I have undergone surgery now and each time I bleed like a pig and end up in ITU. I am sure many of us feel despondent that it’s never simple with us. I have the gift of evangelism and my voice and mind are intact so God has a plan for me. I have only met one other person with EDS but strongly suspect one of my three sons has it. I also met a rheumatology advanced practitioner last week who specialised in EDS!!! There are specialist units in London (private) and Stanmore and some health professionals who are aware of this but it really needs to be in the medical training curriculum with people like us teaching it. More awareness is needed but like you I’ve seen progress in my lifetime and pray my son gets properly diagnosed and supported.