Tag Archive: vEDS
Specialty pharmaceutical company, Aytu BioPharma, announced this week that they will be conducting a pivotal clinical trial for the development of treatment for vascular Ehlers-Danlos syndrome (vEDS). What is vascular Ehlers-Danlos syndrome? VEDS is estimated to occur between 1 in 50,000 individuals to 1 in 200,000 and results from pathogenic variants in COL3A1, which is responsible for producing chains of View page
This story was shared in Spanish, the English version has been translated and in the event of any discrepancies, the original version below with prevail. I have always been the most vulnerable in my family, half of my life has been in hospitals and medical appointments, everything hurt and I was sick all the time. View page
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 following notice is to bring you up to date on the interactions between Acer Therapeutics Inc. and the FDA to try to find a pathway to bring celiprolol to market in the US. The following is from a summary of the actions and recommendations recently released by Acer. Summary of statement On March 18, 2020, 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
Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17 times within the first 3 months of her life. One morning, 3am Effie woke up screaming, she had a seizure and turned stiff: we called 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
