Often, one's own experiences inspire them to advocate for a certain cause. Abbey Hauser is an example, as she has become a voice for young adults within the rare disease…
Note: This is part two of a two part story. Don't forget to go back and read part one! Meghan O’Rouke, the author of the NYT best-selling book Invisible Kingdom,…
When things in her life felt out of control, Ellen Samuels turned to poetry. This wasn’t necessarily abnormal for Ellen. As an English professor at the University of Wisconsin-Madison, Ellen…
The European Commission (EC) has recently granted its Orphan Drug designation to AR101, a PKCβ inhibitor for the treatment of Ehlers-Danlos syndrome (EDS). This decision was based off of a…
Have you ever heard of comorbidities? In short, comorbidities mean the presence of more than one disease or condition in someone at a time. For example, arthritis and heart disease…
In early December 2021, specialty pharmaceutical company Aytu BioPharma, Inc. ("Aytu") announced that its therapy AR101 (enzastaurin) earned Orphan Drug designation from the FDA. According to the announcement, the therapy…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…
My story starts with me being a normal, healthy kid. Or was I? My parents would’ve said so, and so would I, I think. I just wasn’t very strong or…
Click here for part 1! At this point my joint pain was severely impacting my quality of life, so I looked for other sources of help. I joined a…
Ryan Kress was crowned Ms. Wheelchair Virginia 2020 and Camille Schrier was crowned Miss America 2020. Besides their titles, what brings these two individuals together is their medical diagnosis with…
Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis January 10, 2021 Virtual Webinar Event Hear from members of the Ehlers-Danlo syndrome community who have been affected by…
In a recent press release, pharmaceutical company Acer Therapeutics, Inc. ("Acer") announced the publication of data on celiprolol for patients with COL3A1-positive vascular Ehlers-Danlos Syndrome (vEDS). The article, published in the European…
To read part 1 of Nikole's Holiday Confession, click here. I feel guilty when my limitations force others to have to alter their holiday expectations. Like, how do I tell…
Pumpkin pie, ginger-bread cookies, candy canes, and chocolates. Oh what a sweet season! A few nights ago my kids and I spent a few hours crouched over the wafting smells…
Crystal Goodwin, from South Portland, Maine, was diagnosed with mast cell activation syndrome (MCAS) back in 2011. A rare disease diagnosis can turn one's life upside down, and Crystal is…
The Ehlers Danlos Society's European Learning Conference November 7-8, 2020 This event will feature presentations from world-renowned experts on Ehlers-Danlos syndrome and related conditions, including the latest in research and…
When I was 12 years old, following my mom’s sudden cardiac arrests, I was diagnosed with a rare, genetic sudden arrhythmia death syndrome called congenital long QT syndrome type 5.…
Arterial Dissection Arterial dissections refer to the tearing of the inner wall of an artery. Pregnancy creates stress on the body's blood vessels and in rare cases dissections can occur.…
According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…
For Emma, the worst part of receiving her diagnosis with ankylosing spondylitis wasn't adapting to the constant pain, losing her breath over five minutes of standing, being too exhausted to…
In Prohealth, Marlane Quade Cook draws on her own experience with Ehlers-Danlos syndrome to question whether the medical community has enough information and education to properly diagnose all 13 subtypes…
In a story written for The Washington Post, Jessica Slice writes about a frightful predicament for patients with chronic illnesses that cause disability. Jessica lives with dysautonomia and hypermobile Ehlers-Danlos…
Continued from Part 1 The surgery was over 12 hours long. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in…
I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos syndrome kyphoscoliosis type, but it was not diagnosed…
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