Hope on the Horizon: EDS Research Update

Hope on the Horizon: EDS Research Update - Roman Fenner

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Bobby Jones Chiari & Syringomyelia Foundation

7 ай бұрын

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Roman Fenner, former MUSC Norris Lab intern, shares the history of Ehlers-Danlos syndrome and a research update on the genetics of EDS!
This was presented at the Unite@theHill wellness seminar on May 7, 2023. This biennial event held in/near Washington, D.C. includes a half-day of wellness seminars to help patients and families self-advocate. The next day is a full day of meetings with those patients’/family members’ federal representatives on Capitol Hill, which helps patients and families advocate for millions of others. (2023)
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Пікірлер: 8

@theangrytiredzebra 4 ай бұрын

Thank you so much for the work you are doing.

@victoriashepard8176 6 ай бұрын

Wow! This is a really comprehensive run-down of the history and current progress of EDS in the medical world. Thank you so much for making it available to all of us who belong to a club that nobody should belong to.

@theangrytiredzebra 4 ай бұрын

I have hEDS with the normal comorbid conditions we have but also syringomyelia which is a comorbid condition but not as common. I am sick af always in constant overwhelming pain, lots of Neurological issues... Doctors that know nothing about it keep doubting my diagnosis dispite being 9/9 on the beighton score. Its so frustrating!!! Exactly like you said, I'm fighting everyday for survival and im just drowning. Im so beyond exhausted.

@stephanie-iy9xg 5 ай бұрын

I am a nurse practitioner, with fairly good contacts, but can't find help for EDS fo me or my children.

@KiraSieni 6 ай бұрын

Yup. Didnt walk until 18 months. Born with lazy eye, have scoliosis, suspected spinal instability, collapsed lungs, tall and thin, cigar paper scaring, abrupted placenta, congested pelvis, the list goes on. I do believe I have a recessive version of HEDS. My mother was raped by her brother and I dont have any blood relatives that have it. My daughters have some signs but don't meet criteria. I do meet criteria but i have so many vascular features, including the transparent skin, thin lips, etc. My dx is unknown connective tissue disorder, either heds or with heds crossover. And yes im hypermobile

@KiraSieni 6 ай бұрын

Ive has such bad care here in Idaho. Im almost positive I have CCI and or AAI based on my films and symptoms and have literally been labeled "somatically focused" because I dared to try and tell him my symptoms and there were so many. Im literally full of arthritis from my hypermobility- like an elderly person- nobody treats pain. Its horrible and Ive just about lost all hope. We need EDS centers everywhere

@stephanie-iy9xg 5 ай бұрын

I am pretty sure I have 4 generations available for study....

@stephanie-iy9xg 5 ай бұрын

Is anyone on here familiar with EDS and comorbidities? I think there is something with MTHFR mutations, vitamin and hormone deficiencies, and nutrition that we are just missing. I want/need to go back school or get into to work on this.