In the United States, the FDA grants Breakthrough Therapy designation to drugs intended to treat serious and life-threatening illnesses, and/or drugs which show significant improvement over available therapies. After receiving…
Artist and author Emily Suñez has been living with multiple rare conditions for over a decade, including Ehlers-Danlos syndrome and complex regional pain syndrome (CRPS), in addition to more common…
When Isabel Blevins was just 16 years old, she caught the flu. While she recovered well at the time, her health seemingly went downhill after this incident. Suddenly, Isabel was…
An article recently highlighted the stories of young patients with Ehlers-Danlos syndrome and how they are taking their diagnoses to spearhead research about the rare disease. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos…
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…
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…
Patient Worthy was a media partner at this year's NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare…
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…
The story of my disease journey will be very familiar to many patients around the world. I was born and raised in a third world country where quality medical care…
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…
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…
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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