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

I just succeeded in securing approval for a long covid client who was rejected for months to begin these infusions. The process was challenging but I was successful.

avi

Yes! Thank you, Jessina!

Would definitely be interested, I work with a lot of Long Covid and ME/CFS clients who would greatly benefit from these treatments.

I would love to be considered for a scolarship. I don't currently have health isurance. I was diagnosed with CCI/AAI before records were electronic.

awesome resource

Donna — THANK YOU SO MUCH for sharing this information!!!

This is such a huge need. we as the EDS community are so excited to hear about this progress. thanks for sharing!

I know patients using this approach. I understand it is expected to be less effctive because some of the cromolyn is too close to meals. but people who can't do 4oz at a time or have otherchallenges around the normal dosing.

I take mine in gatorade (can't do striaght water) but do the 4 oz liquid to 1/2 tube cromolyn 4x daily which works for me.

If they are in chicago or IL I'd love to help

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