Tag Archive: vascular Ehlers-Danlos syndrome
The specialty pharmaceutical company, Aytu BioPharma, Inc. (Nasdaq: AYTU), announced this week that it has received U.S. Food and Drug Administration (FDA) clearance of its Investigational New Drug (IND) application for AR101/enzastaurin for vascular Ehlers-Danlos syndrome (vEDS). This clearance will enable the company to commence its pivotal PREVEnt clinical trial in early 2022, investigating the ability of enzastaurin to reduce the severe View page
The pharmaceutical company, Acer Therapeutics Inc. (Nasdaq: ACER), focus on the acquisition, development, and commercialization of therapies for serious rare and life-threatening diseases with significant unmet medical needs, announcing this week that they are planning a pivotal clinical trial in patients with COL3A1+ vascular Ehlers-Danlos syndrome (vEDS) with the treatment EDSIVO™ (celiprolol). Vascular EDS is a View page
I had my first heart attack in 2003, but with minor damage and no explanation as to why I had it. In 2015, my second heart attack was discovered by a dissection in one of my vessels. This would open up a study in Halifax Nova Scotia, with many doctors, and with the results 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 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
