Hello! I personally know how hard it is to find care and resources for conditions like Ehlers-Danlos Syndrome, which is why I wanted to create a resource page for my clients and anyone who finds my site. For over a decade, I endured countless symptoms without proper support, facing medical gaslighting and a lack of local referral options. I dedicated hundreds of hours to researching medical journals to find explanations for my struggles. At 22, my condition became severe, yet doctors couldn't grasp what I was experiencing because I appeared healthy, and my lab results were often normal. I deeply understand the hopelessness, frustration, and medical trauma that arises from not receiving the necessary help. It wasn't until ten years later that I finally met a provider who recognized the bigger picture and the patterns emerging from my symptoms. In 2024, I was diagnosed with hEDS, POTS, MCAS, and ADHD. If you need mental health support while navigating these complex issues, including finding Ehlers-Danlos Syndrome resources, MCAS support links, or POTS treatment options, I would be honored to help!
This exercise book has been developed by a Physical Therapist who has been treating patients with Ehlers-Danlos Syndrome since 2005 using this specialized protocol. It provides valuable insights on safe exercise techniques, along with guidance for those working alongside their own PT.
For detailed criteria on diagnosing hEDS, you can refer to this checklist found at the Ehlers-Danlos Syndrome resources link: https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf.
She shares lots of great info and offers online help, including Ehlers-Danlos Syndrome resources, MCAS support links, and POTS treatment options.
Russell Springs Family Medical - 270-866-3161
She is very knowledgeable, listens fully, and can provide telehealth to those in Kentucky, including valuable Ehlers-Danlos Syndrome resources, MCAS support links, and POTS treatment options.
hEDS Diagnostic Assessment in Kentucky. https://www.aprilhalleronmd.com/ for more information.
Heart & Vascular Care in Cincinnati, OH. Also assesses for hEDS https://www.facebook.com/watch/?v=8105523789487297.
Although she isn't local to my clients, she provides valuable telehealth coaching services and has an excellent podcast where she discusses various topics, including Ehlers-Danlos Syndrome resources, MCAS support links, and POTS treatment options.
https://www.hypermobilitymd.com/
Paolo Bolognese, MD - Neurosurgeon specializing in conditions related to Ehlers-Danlos Syndrome.
Telehealth in PYSPACT states or in person in Lexington, KY. https://bluegrasshealthpsychology.com/bhp_team/stephanie-t-judge-ph-d-postdoctoral-fellow/
If you feel dismissed by anyone on this list, please let me know!
