Medical Guidance Condition-Specific Questions and Resources

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.

Lynn, Glad to know you're here. CPOs are so important! I see a lot of ortho, SCI, neuro, and TBI — so I imagine we may have some crossover. I'll be keeping you in mind for a complex CPO case.

Thank you for sharing, Lynn!

Lynn your post provided me additional insight that I will use to continue to support a patient with an AKA, very minimal stump, who thus far has been unable to wear a prosthesis. Than you for posting your heartfelt story!

Thank you for sharing. I appreciate your truth that «progress is rarely linear». That is a core reality, that once embraced, patients will heal more fully.

Thank you for sharing this, Lynn! Your story perfectly explains the fear, patience, and resilience that so many amputees feel but struggle to put into words. Love your work!

Lynn,
This content is amazing — easy to consume, makes so much sense, so helpful.

Also — it makes huge sense to me. As a rare genetics patient with extreme hypermobility in my feet (among other joints) — we have had to do a lot of work to protect the «not bad foot» while having to rehab the «bad» side.

Thank you again for sharing such great information.

Thank you! That is very helpful information and timely!

Thanks so much for sharing all of these, Lynn!

Hi, Rachel! I wish I had a suggestion. Just commenting to boost.

1