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Welcome to the Mayo Clinic Ehlers-Danlos Syndrome page. We are pleased to offer this resource within the Mayo Clinic Connect community. Whether you are new to Mayo Clinic, or an established patient, we want your experience to be the best it can be. Your care is our top priority. We have a team of experts from around the world working together to improve the care of all patients with Ehlers-Danlos Syndromes (EDS) and Hypermobility Disorders (HSD).
There are many reasons why patients from all over the world come to Mayo Clinic. Our patients and families are evaluated with a family-centered model meaning the family pedigree is one of the most important steps in the clinical evaluation. Our approach includes comprehensive evaluations, diagnostics, and individualized treatment plans. Over the years, our staff has gained experience and expertise in diagnosing and treating patients with EDS and HSD. As a result, many physicians refer their complex or high-risk patients with a variety of complications to us due to our ever-expanding experience and expertise.
Through this blog, we will be providing further research updates, topics of interest, and guidance for you and your family. Please stay connected for regular updates to our Newsfeed and explore the available Resources.
Read more about EDS from Mayo Clinic.
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Thank you for this blog. I feel pretty alone with this condition, even though other family members have it. My former PCP had HEDS himself, and recognized my constellation of conditions and referred me for an assessment, but he retired, and none of my current physicians really has a deep grasp of the implications of having it.
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2 ReactionsHi Grace, welcome to Mayo Clinic Connect. I'm glad you found this blog and the patient community here. Allow me to introduce you to some other EDS-ers (people living with Ehlers Danlos syndrome), like @hugforhope @healthhopefreedom @wittmack @csalter @lifetimepain @smbryce1 @moms34eds and @dianeehlinger to name a few.
Please follow the Bones, Joints & Muscles group (https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/) and join the EDS discussions like these ones.
– Ehlers Danlos Syndrome https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/
- Ehlers Danlos Syndrome (EDS) & HSD, calling all types!https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/
How are you doing?
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1 ReactionI tried to make an appointment, was on the wait list then they took me off because my husband had to leave his job and I only have medicare aetna advantage and they won't take it so if you can't afford to pay or you have poor man insurance they won't take the time to see you. I really need help but where I live they no nothing about ehlers-danlos, so no one will help me.
Very disappointed and sad
Iroc
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1 ReactionI'm so sorry. That's so disappointing, and I would be really sad too. Definitely, insurance is frustrating. I recently became a caregiver for my father after he had a severe stroke, and I'm learning a lot more than I thought I ever needed to know about Medicare and Medicare Advantage plans. I'm not sure if this is the case, but one thing I learned the hard way from managing my dad's care (and my own--I have chronic pain and HSD) is it's usually the insurance company that chooses not to include a provider in their network for cost savings, not the other way around. One of the reasons Medicare Advantage plans may seem less expensive is because they may have smaller networks.
Of course this isn't ideal, but since the waiting list is usually long, could it be an option to plan for next year when you're able to switch your insurance to find one that is in-network with Mayo?
My doctor and I also looked into Cleveland Clinic, but I haven't heard much feedback about it.
Where are you located? Before I even knew Mayo had an EDS Clinic, I did an in-person comprehensive consultation with a PT with expertise in EDS. I actually went to her for help with POTS, and she was the one who brought up my hypermobiilty. I've had more luck finding PTs than physicians, though that is extremely difficult too. Because she's a PT, she's not qualified to diagnose it, but she went through all the diagnostic criteria and was able to give me helpful recommendations within her scope of practice and suggestions for where I could learn more. She also does telehealth, but I'm not sure how she handles out of state telehealth (I am in Illinois). She works for herself though.
I'm hoping for you that something turns up.