Tag Archive: vascular Ehlers-Danlos syndrome

Recreating myself in a safer environment

CW// Discussion of surgery and medical trauma When I was a child, I recall my mother suffering from daily migraines, and neck pain. The day before my 13th birthday, my mom passed away. At the time, it was said to me that she died from “an aneurysm in her heart”. Now, I know that she
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Aytu BioPharma Update- AR101/Enzastaurin IND Cleared by FDA

Aytu BioPharma Announces FDA Clearance of Investigational New Drug (IND) Application for AR101/Enzastaurin in 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
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vEDS clinical trial announced

Acer Therapeutics Plans Clinical Trial for EDSIVO™ (celiprolol) in Vascular Ehlers-Danlos Syndrome 

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
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I just try to live a normal life

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
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Claudia sits in a hospital bed with wires attached to her chest

As I clung to life in the hospital, I was diagnosed with vEDS

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. 
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Kaily's story

Advocacy became my biggest lifeline during my diagnosis journey

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
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The Ehlers-Danlos Society launches vEDS ECHO

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
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