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Primary Care and EDS May 18, 2023 | By Samantha Campbell (@samanthacmaa)
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@colleenyoung

Success for ongoing care for EDS after consultation with Mayo Clinic's EDS clinic relies on established care with a local PCP for long-term follow-up.

Here is a link to the healthcare directory kept up-to-date by the EDS Society.
- EDS Healthcare Professionals Directory https://www.ehlers-danlos.com/healthcare-professionals-directory/

Ehlers-Danlos syndrome care at Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179)
· Your Mayo Clinic care team. Ehlers-Danlos syndrome affects many different body systems, so it's important to have different specialists involved in your care. At Mayo Clinic, your team may include specialists in medical genetics and physical medicine and rehabilitation — as well as vascular, cardiovascular, neurological, orthopedic and pediatric surgeons, if necessary.

· Advanced diagnosis and treatment. There are many different types of Ehlers-Danlos syndrome and the symptoms can overlap. Mayo Clinic physicians have extensive expertise in the condition, so they can quickly determine a precise diagnosis and treatment plan.

· Long-term management. The goal at Mayo Clinic is to propose a long-term management plan that can be followed by your local primary care physician.

Attached are 2 helpful documents: Frequently Asked Questions and Your Next Steps: EDS Clinic

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Replies to "Success for ongoing care for EDS after consultation with Mayo Clinic's EDS clinic relies on established..."
emo | @emo | May 18, 2023

Thanks @colleenyoung. That is helpful. I guess that's the thing though; at least based on my experience and even having received these documents, it's not super-clear how one gets connected to the other specialists at Mayo via the EDS Clinic. Even with the agreed-upon goal of providing a treatment plan to be followed locally, they seem to offer their patients some of the resources/services that Mayo has, which are more difficult to obtain elsewhere (i.e. POTS and Fibromyalgia programs; health coaching; mind-body therapy through the Integrative Medicine Clinic, etc.), but how to access those, complete the consultations required to access them, and getting to the final appointment wasn't really explained.

I was seen at Rochester for a full evaluation a few years ago (unfortunately, they misdiagnosed me, but it worked out for the best in the end) , and almost all the consultations were pre-scheduled so that I could do all of that while in town. The expectations and wrap-up appointment were clearer. With the EDS Clinic, some things were prescheduled, but other things weren't, and communication is sometimes spotty, even when my primary care provider has tried to reach out.

BUT, I know the EDS Clinic is still growing, and we're all human and can only take on so much. And I'm so glad the clinic exists. I'm hoping in time I will receive the follow-up on next steps soon. Thanks for sharing this; with the EDS Clinic being a newer clinic, I think it'll help others who are seeking out information about EDS and the EDS Clinic at Mayo.

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