Medical Guidance Condition-Specific Questions and Resources Connective Tissue Disorders (EDS & friends)
This is a space for our advocates who focus on heritable connective tissue disorders - from EDS to marfans to Loey Dietz - and their comorbidities - from dysautonomias like pots and O.H. to MCAS, from endometriosis to sjogrens, and beyond.
Feel free to share resources here. Share successess. Share frustrations.
Advocates are VERY welcome here if they work in this space, whether they are also have lived experience in this space or have learned to support our zebra community.
Potential new way to take cromolyn sodium
Hi all! If you have MCAS patients (especially those with concurrent ME/CSF) you might want to check out recent case study series out of Hopkins... See More
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1 comment
AnnMarie Cross
4 days ago
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.
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.
I'm Full! Posting to Connect and Get a List for Referrals
Hi! I am FULL. Very full. Likely won't have space again for clients till sept or oct, and launching online courses soon for EDSEers. I'd like to... See More
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Mel Randle
1 month ago
If they are in chicago or IL I'd love to help
Elizabeth Schmidt
1 month ago
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.
Cyndi Eide
2 months ago
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
The Truth About EDS: A Doctor's Experience with Medical Dismissal with Linda Bluestein
Dr. Linda Bluestein shares her extraordinary medical and personal journey through the underrecognized world of connective tissue disorders... See More
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A Brief Primer on Mast Cell Activation Syndrome and Mediators
FROM: Center for Complex Neurology, EDS & POTS ostSonpred203s.Patients with MCAS (Mast Cell Activation Syndrome) may experience numerous... See More
1 428 views