Medical Guidance Condition-Specific Questions and Resources

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

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.

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