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16 Things Doctors Don't Tell People About Ehlers-Danlos Syndrome

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It can take years to get an Ehlers-Danlos syndrome diagnosis, and when you do, you might find that your doctors still don’t know everything there is to know about the condition. Many are under the impression that EDS is just another way to say “hypermobility,” and while that certainly can be a huge symptom, there are so many other symptoms and comorbidities to consider. Though there is no cure for EDS, there are techniques and therapies that can help — but without a knowledgable doctor to help you navigate different options, it can be hard for a patient to even know what to look for.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

We wanted to provide a resource of information that that your doctor may not tell you — but real people with EDS think everyone in the community should know. Below, find what our Mighty readers said when we asked what doctors don’t tell people about EDS. When it comes to diseases that aren’t well-known in the medical community, patient experiences and information are invaluable, especially to those new on the journey.

Here’s what our Mighty community shared with us:

  1. “The amount of closely related medical conditions is very important to know and learn about. Most doctors rarely understand or know about them, but some can profoundly affect life of those with EDS or our children, siblings, parents or other relatives.” — Angie K.
  2. “It’s a daily struggle between wanting to be super active and fit like other people, and knowing your body’s limitations. I have always pushed my body, and it has pushed back, from even the youngest memories. I am lucky, now at 32, to know why I always felt this way.” – Erica M.
  3. “It’s not ‘just’ hypermobility! I was told by a doctor being hypermobile was great! I could be a dancer or a gymnast. I sat in his office in a wheelchair!” — Dylan H.
  4. “There is no cure. It’s about bouncing from specialist to specialist, medication to treatment, until you find what works for your symptoms. Don’t lose hope and whatever you do, do not lose a positive attitude. Just do your best and don’t get discouraged.” — Karrie A.
  5. “You will probably always have to be the most knowledgeable person in regards to your own care. Most doctors are clueless about this disease, and don’t know how all the comorbid conditions are connected. If you want good care you’ll have to become the expert yourself.” — Aubrey G.
  6. “There is no one linear ‘textbook’ presentation of Ehlers-Danlos syndrome. Even if a doctor specializes in EDS treatment, they will never see the same manifestation of the syndrome twice. Thus, a doctor should never decide to treat a patient solely based on whether something did or (didn’t) work for a patient in the past.” — Michelle R.
  7. “Doctors might not believe you actually have EDS hypermobility later in life when your joints have gone stiff. You have to point out the 2017 criteria to them.” — Louise M.
  8. “EDS can affect every system in the body since it’s a connective tissue disorder. It wasn’t until a doctor actually looked at all of my issues (joint pain, IBS, easy bruising, among others), that EDS was suspected. Most specialists only looked at the system they specialize in, not the whole body.” — Noelle R.
  9. “You can still live a good life despite all of the challenges you will face. Take care of your joints beginning *now* because they have to last you the rest of your life. Physical therapy is essential — you will need it for the rest of your life.” — Kathryn M.
  10. “The pain is sneaky and EDS is often diagnosed as fibromyalgia. The reality is that fibromyalgia is a known possible comorbidity of EDS.” — Mikki I.
  11. “We are resilient and incredibly tough people. Not something to aspire to, we shouldn’t try to stick it out… but we often do, and that’s actually pretty impressive.” — Tab M.
  12. “A big part of what I had to do was advocate to protect my kids’ joints. One physio designed a regime for my most effected son that included lots of running. They have thanked me now… I always told them it’s not about being about to move now — it’s about being able to move later!” — Angela T.
  13. “EDS isn’t ever exactly the same, even between family. It affects and will affect every single part of your body because it’s a collagen disorder.” — Zakary E.
  14. “Joints are only half the problem. Bleeding, bruising, and GI problems can be just as bad or worse.” — Elisabeth W.
  15. “EDS itself may not be progressive, but the symptoms often are. Your symptoms can get worse over time, or fluctuate frequently depending on a dozen different factors — stress, injury, illness, environment, other co-morbid diagnoses, diet changes, med changes, and sleep can all affect your symptoms.” — Jessica B.
  16. “It’s a lot harder than the doctors will tell you, and it’s a painful syndrome, but you will make it through.” — Lauren B.
Originally published: June 20, 2018
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