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A frequently asked question by patients with EDS/HSD is “who should I follow with for my annual visits?” Every patient should follow with a primary care provider (aka “PCP”) to start. This is highly encouraged even for patients who have had a consultation at Mayo Clinic. You may have had a physician act as your “quarterback” for coordinating your care at Mayo Clinic, and this is exactly what a PCP will do for you in your local area. Your primary care team can diagnose and treat urgent issues and often has a nurse line that can help you decide the best way to address urgent health matters. Medication refills, disability paperwork, and referrals are all within the scope of a PCP. Annual routine tests for hEDS/HSD patients without comorbidities are the same as the general population, which include a physical exam with vital signs, lab work, vision testing, immunization updates, and age-appropriate cancer screening. Bi-annual dental visits are also recommended. An echocardiogram (ECHO) does not need to be repeated on an annual basis unless recommended by your providers. A PCP (Choosing a Primary Care Provider) is usually a family medicine trained physician, but they can also be advanced practice providers, nurse practitioners (NP), physician assistants (PA), or even of different specialties like internal medicine, pediatrics for children, or gynecology for women. Sometimes patients with hEDS/HSD connect with rheumatologists, geneticists, and physiatrists, but that may not be necessary for long term care. One area that does require long term monitoring and care is physical therapy (Physical Therapy and Ehlers-Danlos Syndrome ), so it’s important to establish locally with a therapist knowledgeable on EDS/HSD. Other comorbidities may require routine visits with other specialists such as neurology, gastroenterology, cardiology, or allergy/immunology, but that only depends on the needs of each individual patient – definitely not required by all.
More questions then inevitably arise, such as “do I need to have someone who is an expert on EDS to be my PCP?” In a perfect world everyone would have an expert on all the needs particular to them. Unfortunately, in the medical landscape that we live in today, this is not possible. We can be hopeful that improved algorithms and even artificial intelligence may one day help fill some of these care gaps, but in the meantime, we must adapt. Therefore, we structure our programs and education to be empowering to you – as you are your own best healthcare advocate – to provide a solid understanding of what is normal and abnormal in relation to EDS/HSD. This allows us to comfortably say that you should be able to follow with any PCP who is a good match for you. And as managing your condition is a constant process of learning, just like we have a limitless supply of future topics to post in this blog, we are ALL always learning. So the most important characteristic of a good PCP will then be their willingness to also learn, listen and keep in touch. Keep following here for more updates on what we continue learn that we want to share with you!
Author: Dacre Knight, MD, MS
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Is there anyone recommended that knows more about EDS within MN or WI? Most Drs, NPs, PAs do not know much on Ehlers Danlos. Unfortunately, some of us suffer for years, before a proper diagnosis. Cervical Instability is also something that most neurologists know nothing about, nor how to even diagnose you properly. It's astonishing how long and how many people suffer from not obtaining their correct diagnosis of EDS.
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2 ReactionsAgreed. I’m in Illinois and trying to find a doctor to diagnose me. I feel I have had this for years and no one ever connected the dots.
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1 ReactionWhich is one reason it takes us a long time to be correctly diagnosed. My quality of life has greatly diminished over the years. There are some days, I would rather not be here at all. Ironically, I work for Mayo and yet have a Dr to find that actually knows something about EDS. Most would have you just do the Beighton Scale and if you do not get 9/9, then that's about as far as they go. I used to be 9/9, but as I age I have myofacial chronic pain and my body is full of deep muscle knots. I am not longer able to touch my hands flat onto the ground. It's to bad that they don't realize there are more than just flexibility that goes into EDS that is considered criteria. Until more Drs become familiar with it, we will suffer and continue to be gaslighted.
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2 Reactions@csalter @dianeg44
There is a great resource offered through the Ehlers-Danlos Society to help find EDS specialists See the “Healthcare Professionals Directory” here: https://www.ehlers-danlos.com/healthcare-professionals-directory/
Mayo Clinic's EDS clinic is listed there, along with many others across the US listed by state. Providers from other countries from around the world are also included.
Mayo Clinic accepts EDS patients at all 3 campus locations in AZ, FL and MN. People can self-refer for concerns related to EDS and/or hypermobility. A physician referral is not required. Geneticists are also available at all locations although appointments may be limited for a genetics consult in AZ and MN at this time.
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2 ReactionsI completely understand in an ideal world we "should" be seeing a PCP and local specialists as needed (neurology, physical medicine & rehabilitation, gastroenterology), but unfortunately the truth is it is extremely difficult to locate providers who are knowledgeable in these concerns, or at least that's been my experience--and I write this as someone who in theory has access to many resources in Chicago. My PCP happens to be amazing, but just because she gives me recommends I see an autonomic neurologist, a PT/OT experienced with chronic pain and hypermobiilty, a GI doctor who understands the overlap between EDS and GI conditions, doesn't mean she can connect me with people who can help.
Yes, there are many neurologists, but there are only two in Illinois who treat POTS and no one who treat the type of autonomic neuropathy I have (common co-morbidities of hypermobile EDS). Waitlists number in the years, not months.
While Mayo Clinic may accept EDS patients across all 3 campuses, I've had multiple appointment requests declined over the years. I'm sure this has happened to others. Ultimately, I found one clinic at Mayo that accepted a self-referral, which I learned about by chance.
I know with the volume of patients, it's simply not possible to follow every patient who's seen at Mayo or in the EDS Clinic, but I do wish that after being evaluated at Mayo, we could still follow up to take advantage of the network of specialists available because with the backing of the original physician who coordinated care at Mayo, there's much less burden on the patient to justify why we are there and to get providers to believe us and understand the systemic implications of EDS/HSD.
As it is, after my return from Mayo I've felt my follow-up questions regarding care that originated at Mayo (sent through the portal, as recommended) have been frowned upon or brushed off, rerouting me to my PCP or local care team. If my care team at home could have helped me, I would not have flown across the country to go to Mayo. I concluded my trip there without clear instructions about when or how I'll get to meet with my physician at Mayo to discuss results from testing and develop a plan of care. After feeling so supported, the uncertainty and having the questions brushed off feels really disappointing.
Even if there were a database of providers that was searchable by region (which I also realize is hard to manage and a pie-in-the-sky dream), similar to "Psychology Today," or some way to connect us with knowledgeable providers after we complete our Mayo evaluations, it would be a huge help.
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1 ReactionSuccess 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
Frequently Asked Questions Ehlers-Danlos Syndrome (EDS) Clinic (Frequently-Asked-Questions-Ehlers-Danlos-Syndrome-EDS-Clinic.pdf)
Your Next Steps EDS_ Ehlers-Danlos Syndrome Clinic (Your-Next-Steps-EDS_-Ehlers-Danlos-Syndrome-Clinic.pdf)
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1 ReactionThanks @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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