Hope on the Horizon: EDS Research Update - Roman Fenner

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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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[@theangrytiredzebra]

Thank you so much for the work you are doing.

[@theangrytiredzebra]

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.

[@victoriashepard8176]

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.

[@stephanie-iy9xg]

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

[@KiraSieni]

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]

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]

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

[@stephanie-iy9xg]

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.