Medical Guidance Condition-Specific Questions and Resources Connective Tissue Disorders (EDS & friends)

Hi Rachel, I have some openings. All my clients have chronic conditions, and more than a few have hEDS in addition to other health issues. In addition, I myself have POTs, fibromyalgia, Lupus, Secondary mast cell, and likely hEDS. So I deeply understand what those with chronic conditions are going through. Please feel free to reach out to me at elizabeth@StraightfromtheHeartPA.com or 442-777-3251.

Hi Rachel. I recently started taking clients in need of surgical companion and/or medical travel logistics services. My specialty is with patients needing craniocervical fusion, Chiari decompression, tethered cord, styloidectomy, vascular decompressions as I have experienced those myself. I recently retired and am able to travel with those needing companionship. I am not sure if I can share my website here, new to GNA and so grateful! Cyndi Eide

Hello Rachel! I think I responded to your post on FB, but haven't had a chance to reach out — the patient advocacy company that I work for, Norbella Health, specializes in EDS.

You can check out our team here:
www.norbellahealthadvocates.com/team

I am about to go on leave, so I'll circle back around to you when I get back, but Caroline Kim, the founder or Maggie Buckley (she's an EDS powerhouse, has been involved in many different EDS organizations over time) would be great people to connect with to discuss forwarding potential clients.