Tag Archive: vascular Ehlers-Danlos syndrome
TW: Contains mention of suicide. For years, the struggle to find the words to raise awareness for my genetic condition, vascular Ehlers-Danlos syndrome (vEDS), has mimicked the years of working through speech therapy, as my family tried to decipher the tongue-tied soliloquy I called talking. A million details scrambled together, just enough to make it […] View page
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Hello all, my name is Faith. I am 27 years old, my diagnosis journey began in 2017. Feb 13, 2017, to be exact. That morning I was awakened from my sleep with really sharp pains in my stomach. I thought it was just the normal gastrointestinal issues I normally live with, being that I was […] View page
One evening I went to bed. My wife made a comment to me that she had some stomach cramps. I told her I hoped she would feel better and I went to sleep. Around 4:30 AM I woke up with this awful pain right below my ribs directly in the middle of my abdomen. I […] View page
The Ehlers-Danlos Society is delighted to launch the new vEDS ECHO: a program led by Dr. Sherene Shalhub dedicated to increasing awareness and education in all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS). VEDS ECHO is a revolutionary program that seeks to support health professionals around the world in caring for patients […] View page
Celiprolol and vEDS: facts, limitations and recommendations In the context of the recent press about celiprolol and the FDA announcement not to license Celiprolol in the US for use limited to treatment of people with vEDS, we thought that it was time to bring together the global vascular EDS community from within the consortium, to […] View page
I have dedicated my life to EDS awareness, educating doctors and medical personnel at every turn about EDS and vEDS. We must stop that phone call in the middle of the night. View page
