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EDS Clinic Updates, EDS Awareness
As you may have seen from our recent post, May is EDS/HSD Awareness Month. It is a month set aside, for people around the world to acknowledge and show their support for Ehlers-Danlos syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). As the month comes to an end, our work continues.
Clinical care for those suffering from symptoms caused by EDS and Hypermobility Spectrum Disorders (HSD) expands as awareness into the conditions improves. In turn, the Mayo Clinic EDS Clinic is constantly evolving to provide the best care while meeting the high demand for evaluations. One recent step taken has been the addition of a new EDS provider, Shilpa Gajarawala, as of winter 2022. Shilpa’s addition to our team allowed our waitlist to re-open in March 2023 and see more patients while maintaining the high standards of Mayo Clinic service and care. Along with Dr. Knight, Shilpa is active in research and has a strong background in Women’s Health.
Do you have any questions for the Mayo Clinic care team about the EDS Clinic?
Keep following here for the next posts!
Authors: Brii Sessions; Dacre Knight, MD, MS; Shilpa Gajarawala, DMSc, MPAS, PAC.
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I would like to get in for an appt. Been waiting awhile now as was told they didn't have but one doctor and was swamped and wasn't taking any new patients at that time.
You can call the EDS Clinic directly and ask to be put on the wait list; hopefully it's still open, as per the post! https://www.mayoclinic.org/departments-centers/ehlers-danlos-syndrome-clinic-florida/overview/ovc-20522975
Unfortunately, I haven't had the smoothest experience, but I'm trying to be understanding, as it's a relatively small team and newer clinic. Good luck to you though.
Thank you for your reply. Looks like that is one in Florida and I'm in Iowa going to Rochester MN clinic. I'm sorry thought it was for there.
Oh, no problem. I actually didn't even know they had an EDS Clinic in Rochester. I live in Illinois and was evaluated at Mayo Rochester in 2017 (but they missed the diagnosis, and I have other intertwined diagnoses). Last year, my doctor suggested I try to put in another appointment request at Rochester, and it was promptly declined. When I spoke with someone on the phone there, they told me about the EDS Clinic in Jacksonville. He explained while they treat EDS at all locations, Jacksonville has a dedicated clinic. And they allow self-referrals in this specific clinic, whereas at Rochester in particular, it can be very difficult to get an appointment. It almost feels like an application process, and I didn't get in, so that wasn't an option for me. I especially liked how at the EDS Clinic in Jacksonville, they lowered the barriers to get an appointment. But I hope it works out for you, as Rochester would be much closer!
What part of Illinois you from ? I just moved a cpl years ago from IL. My health got pretty bad for about 5 yrs and my son and family offered me to come live with them in Iowa. I jumped on it. They are very supportive and help me with my appts and such. I have 4 lovely grandchildren that help keep my spirits up and understand when I'm not having good days. I don't care for the winters here tho. 😆
I got into Mayo at Rochester due to another situation and have had impressive work done. I now have 4 specialist doctors there and working on an orthopedic request now. I am trying to get all of my special needs addressed in one location. I like it that each doctor has access to your whole file of all that's going on with you and they talk with each other as too what is the best way to approach your unique situation.
Thank you Gor your replies and praying the best outcome for you also. God bless you in your continued care.
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
I see several different specialist in MN. One for spine issues, one for kidney issues, one for urinary issues, one for hip issues, but none there for just treating EDS. Most my issues are from symptoms of EDS. It's all good as I'm getting taken care of for all issues I'm having.
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2 ReactionsIf 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.