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EDS Clinic Updates, EDS Awareness Jul 11, 2023 | By gimblogger09 (@gimblogger09)
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@cl2836

Is this clinic just for diagnosis and initial care planning? In other words, is there any multidisciplinary care with EDS expertise for people who are diagnosed but suffering from several interrelated issues and symptoms that cannot be treated piecemeal or by traditional (non-EDS) treatments

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Replies to "Is this clinic just for diagnosis and initial care planning? In other words, is there any..."
emo | @emo | Jul 11, 2023

If we’re referring to the EDS Clinic at Mayo Jacksonville, they offer a comprehensive evaluation for EDS/HSD (if needed) and also provide referrals to the relevant specialists within Mayo to help come up with a care plan. I guess you could call it a multidisciplinary evaluation?

But as far as I know, they don’t continue to follow you—the idea is to provide guidance for you and your care team at home. It feels to me like the goal is to provide patient and provider education/context for self management.

I wish they would continue to follow patients, but also I understand there’s a huge need and not enough providers.

I believe there are clinics that provided multidisciplinary care, but in my experience, wait lists are LONG. I’m in the Midwest and the closest clinic to me is at Indiana University—the wait list as of last summer was 2 years, and they had stopped accepting people on the list who had hEDS because the wait was so long.

I heard that Cleveland Clinic will continue to allow follow-ups with their EDS/HSD patients.

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