Looking for doctor recommendations for Ehlers-Danlos syndrome

A geneticist diagnostic me 1983 and there are home tests for &500. I ask doctors what they know and then usually never return. The EDS web site has lists but the ones that I talked from the list knew nothing. Asking is the only way that has worked for me.
Good luck !!

Hi there- I live in Illinois—I also have POTS and hypermobility (along with a slew of other co-occurring conditions…)

I know you mentioned you’re in the Minnesota area, and unfortunately I can’t help with that… But I do know from experience doctors or providers who feel confident diagnosing EDS, even if it’s the most common hypermobile type, and/or POTS are exceedingly rare.

I live in Illinois, and you’d think there would be a ton of resources in Chicago, and there are not! I saw a PT who’s very experienced with EDS, and she told me the closest EDS Clinic is at Indiana University and has connections to the EDS Society. But the wait time was 24 months, if they’ll even consider a referral from your provider (they do accept referrals from the PT I saw), AND as of last summer I was told they don’t accept people with suspected hypermobile EDS because the wait list was so long. That eliminated me from that wait list.

Honestly, Mayo Rochester would probably be the best and closest place to you if you can get an appointment with an appropriate provider. I believe Cleveland Clinic also has an EDS Clinic and may be “easier” to get into, whatever that means.

But if you’re willing to go farther, you could look into the EDS Clinic at Mayo Jacksonville. My doctor submitted an appointment request to Rochester (which was denied), but the person who delivered the news happened to mention in passing that Jacksonville is the only Mayo Clinic location with a clinic specifically for EDS. You can actually call the clinic directly (phone number is on their website), and they accept self-referrals (or at least they did when I called last year). It’s a newer clinic (opened in 2020) and a small team, so they might have changed their screening process since there was so much interest, but you can literally call and ask. I believe their wait list is open again because they just hired a second provider. When I got on it, the wait was running about 1 year to get an appointment, but I “just” waited 10 months. I did go, and I’ve had a mixed experience, but there were special circumstances that mucked things up, which would requested a whole other post to explain >_<

They don’t automatically offer genetic testing, but I understood they will order it if they determine you may have a subtype with genetic markers. You might already know… Hypermobile EDS is the most common form, and it has no genetic markers, so if they diagnose you with hEDS and don’t suspect another subtype, they most likely wouldn’t order genetic testing.

I saw an EDS PT in Illinois who offers comprehensive consultations—funny thing is I actually saw her for POTS, but she pointed out I had symptoms suspicious for hEDS. She’s in private practice, but also does telehealth. I’m not sure if she would or could do a virtual consult across state lines, but she might since she works for herself? As a PT, I don’t think she’s
qualified to diagnose EDS, but she did go through all the diagnostic criteria with me. And what I found most helpful is she was very comprehensive with treatment options.

If you’d like her name, let me know and I’m happy to DM it to you. I just feel weird posting it publicly since she’s just one person and self-employed, and I’m not even sure if she can do consults out of state. I swear this is not a sales pitch >_<

I just wanted to offer what I experienced in case it helps on your journey. It’s pretty tough to navigate these conditions; feel like we’ve gotta help each other out. Good luck to you, and hoping it helps at least a tiny bit to know you’re not alone.

Exactly what is EDS ?

@7881188 EDS is the acronym for Ehlers-Danlos Symdrome. Here is a link from Mayo Clinic where you can read about it.
https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125

I feel like I'm in EDS-doctor-search-hell! I have been researching and looking for any doctors in the US who could help my daughter (age 32, suspected hEDS and POTS), and I am striking out. I live in Austin TX and she's in Asheville NC, but at this point, we're willing to go anywhere in the US. I've contacted all the experts listed on the EDS Society website, but couldn't find ANY that are still in practice! I'm also monitoring FB and reddit sites and following any and every recommendation I could find.
Tulane is supposed to have a great EDS Clinic, but they have a 3-year wait!
Mayo Clinic in Jacksonville was recommended, and I was so excited when I was given a phone appointment to discuss scheduling an appointment. However, when I didn't get the call this afternoon, I called them. They said they sent an email to my daughter that said they weren't taking any appointments! When pushed, they said we could try calling back in about a year. I have just been in tears. Any of you all who are dealing with this know who depressing and debilitating it is to have this type of condition, and be unable to find qualified medical help.
Thankfully, she is seeing a PT in Asheville who is knowledgeable and helpful.
Let's all share any resources we find. Good luck and God bless to all! Ginny

EDS/POTS doctors are important, but are sadly still hard to find. An important supplemental strategy is building a team of specialists for specific problems. My hypermobile EDS has landed me in the ER for cuts, sprains and broken bones my whole life, and I started seeing a slew of specialists decades ago - orthopedic surgeons, ENTs, neurologists, spine and pain specialists - many will also need gastroenterologists, cardiologists, etc. Educating ourselves - and our doctors - is clutch for getting good treatments and preventing those that don’t work. One great story is that my that extraordinary hand and arm surgeon developed an EDS knowledge base to treat other EDS patients after listening to my ( sad) stories 🙂

Thanks for that info. Just out of curiosity, where are you located?

I’m in the DC Metro area. I’m aware of only one internist, in suburban MD, who specializes in EDS… and he quit taking new patients over a decade ago.

POTS hit my niece hard several years ago. I found a cardiologist specializing in POTS in northern VA and got her an appointment. She had months of testing early this year, then waited 6 months to meet with the doctor (it would have been even longer if I hadn’t called every day to check for cancellations). After meeting once, being prescribed drugs and a treatment plan, he notified her that her follow-up appointment was cancelled; she could call back in a year to schedule her follow-up.

My niece is young… I’m hopeful that EDS/POTS awareness and research will improve quickly enough for her to benefit.

Any Drs in Rochester/MN/WI familiar with Ehlers Danlos (hypermobile)?

I have been looking for a Dr that is more familiar with Ehlers Danlos that is located in Rochester, MN clinic or WI clinics.I am unable to travel to Jacksonville.While it is noted that I have a connective tissue disease, most Drs do not feel comfortable enough to diagnose hEDS. I am 40 yrs old and no longer am able to do 9 out of 9 on the Beighton scale.I am able to do 6 out of 9 and when I was younger I was a 9 out of 9.I am not looking for a "cure", as like the dysautomic Dr in Rochester said "It doesn't matter, as there isn't really a cure". I realize that, but I would like validation that all these years of suffering was from something, and not just "anxiety and depression".

I have plenty other symptoms that correlate with hEDS as well.

Even if there isn’t a cure, I agree the validation is important. Plus, someone who can support you and see how everything fits together can be better positioned to help coordinate care and hopefully effective treatments (I know, preaching to the choir here!) So it does matter.

I’m not from the area, so unfortunately I’m not familiar, but having been in a similar situation, I have some ideas?

If you’re near Rochester, have you tried getting into Mayo there to be evaluated? They have doctors who evaluate and treated EDS, but I’ve heard mixed reviews.

The EDS Society has an online directory: https://www.ehlers-danlos.com/healthcare-professionals-directory/

Also, it may be worth posting or searching the EDS support group on the website Inspire. There are a lot of postings asking about doctors and the group is pretty active.

I recently found an all-telehealth option: EDS.clinic. But it just opened in February, and seems like they’re not really up and running. I learned about them through this article: https://www.chronicpainpartners.com/a-new-eds-clinic-coming-to-a-town-near-you-via-telehealth/

I got so frustrated trying to get a diagnosis that I ultimately went to a PT who specializes in EDS. She can’t clinically diagnose it, but the evaluation was extremely thorough (90 minutes but it went to 2 hours). She reviewed the diagnostic criteria and provided detailed recommendations. It’s also expensive, but I was able to file a claim with my insurance. I did get validation.

She’s in Illinois though, but she may do online consultations (I don’t think PT can be delivered by telehealth out of state). This is the person my PCP recommended: https://www.wendy4therapy.com/

This PT I know for sure does out of state consultations online: https://www.lilianholm.com/ But I don’t know if she approaches evaluation the same way, and I don’t have personal experience. It could help if you’re more interested in treatment.