Primary Care and EDS
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