Primary Care and EDS

Jan 28, 2022 | Samantha Campbell | @samanthacmaa | Comments (4)

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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@csalter

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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Agreed. 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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@dianeg44

Agreed. 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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Which 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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@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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