Hypermobile Ehlers Danlos Care Team at Mayo Clinic?

Does the Mayo Clinic in Arizona treat Ehlers Danlos Syndrome and it's comorbidities? I am awaiting genetic testing for it. I have three doctors who think I have the hypermobile version and the possibility of the vascular version because of my family history. I am looking for a care team and saw that Mayo has care teams for EDS, but it didn't say which of it's 3 locations offered it.

Hi Kelly and welcome.
Yes, Dr. Dhamija is a geneticist in AZ and she sees EDS patients. See her bio here. https://www.mayoclinic.org/biographies/dhamija-radhika-m-b-b-s/bio-20305639.
The comprehensive EDS Clinic is located at Mayo Clinic in Jacksonville, FL.

@katemschultz posted this informative message when she was preparing for her first EDS visit to Mayo in Rochester
– What to expect at Mayo Clinic, Rochester https://connect.mayoclinic.org/discussion/what-to-expect-at-rochester

@jthigpen writes about their experience at the EDS Clinic at Mayo Clinic in Florida here: https://connect.mayoclinic.org/comment/320392/

Whether you seek care at Mayo Clinic in Arizona, Florida or Minnesota, you will have the advantage of multidisciplinary providers working together. They have can draw on the expertise of their colleagues, thus your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away.

I can see why you might prefer the Arizona campus given that you have accommodation and family support there. What questions might you have Kelly?

Does the EDS Clinic include Mast Cell Activation Syndrome, too? Thank you.

Hi Lucy, the short answer is yes. The EDS Clinic includes care of mast cell activation syndrome. The EDS Clinic is centered in the Division of General Internal Medicine. It is routine standard of care for the internist physician to assess for all co-conditions and complications of EDS and coordinate care however needed.

Does that makes sense?

I have recently been seen at the Scottsdale campus and have several appointments in the coming months. The rheumatologist believes that I have hEDS so I am currently awaiting an appointment. Since the Comprehensive EDS Clinic is located in Florida would that be my best option? Scottsdale is definitely most convenient but I’m willing to travel elsewhere.

Hi @kngillespie, that is a personal choice. I might suggest that you call Mayo to discuss your options. Since Mayo experts work together across campuses, there may be several variations for you. For example, I might ask if you could have a thorough work up or assessment at the EDS clinic in Florida (if travel isn’t a problem) and then be seen for follow-ups in Arizona.

31 year old daughter diagnosed with hyper mobile Ehlers Danlos, Hypothyroid, and seizure activity.
Can she please be seen at the clinic for more specialized treatments? She is getting depressed with the progression of disease and the daily pain associated with it.

@sriddle, I can imagine you are very worried about your daughter, including her mental state as she deals with difficult diagnosis. You'll notice that I moved your question about being treated at Mayo Clinic to this existing discussion
- Hypermobile Ehlers Danlos Care Team at Mayo Clinic? https://connect.mayoclinic.org/discussion/hypermobile-ehlers-danlos-care-team-in-arizona/

@katemschultz posted this informative message when she was preparing for her first EDS visit to Mayo in Rochester
– What to expect at Mayo Clinic, Rochester https://connect.mayoclinic.org/discussion/what-to-expect-at-rochester

@jthigpen writes about their experience at the EDS Clinic at Mayo Clinic in Florida here: https://connect.mayoclinic.org/comment/320392/

The comprehensive EDS Clinic is located at Mayo Clinic in Jacksonville, FL. Might requesting an appointment at Mayo Clinic in Florida be an option for you and your daughter?

Hi - I have hEDS that shares comorbidities with Mast Cell Activation Syndrome (MCAS) and POTS - this trifecta is common and I had no awareness I was living with all 3 until I received my diagnosis from the Ehlers Danlos Society in UK (now w/headquarters in NYC as well) - I met an online screening tool and was then seen by the CMO for an intake and confirmed for thr hEDzs criteria to participate in a 1000 person HEDGE DNA study. If I had the means to be seen by the Mayo Clinic I would!!! I’m in NC with only one practitioner/cardiologist that does the tilt table table test for POTS and less available for MCAS and worse yet for EDS - I’m not being treated for the latter. This falls under the umbrella of Dysautonomia and there is a society webpage for that as well that I encourage you to check out. The Mayo Clinic option you have is awesome! I also encourage you to either go on YouTube or the Ehlers Danlos Society website to watch a myriad of medical webinars that may also provide you with insight and direction or even help to cue you in to what all you may or may not be dealing with. I know it did me! One has a limited amount of time to go over everything in a Drs appointment and these overviews and tips for treatment and support may help to narrow things and prepare you w/talking points for your visits that seem to resonate with you to target. Best of luck! hEDStrong