Written by Sara Tompkins NOTE: The perspectives voiced in this article are solely those of the author. The development of drugs for rare diseases has always been a complex and…
A rare disease diagnosis can often take many people by surprise. The diagnostic process can be long and tough; managing symptoms is often no less easy. Ellen Inouye discovered this…
Exercising with Ehlers-Danlos syndrome (EDS) is complicated. On one hand, you have to do it: exercise is the best treatment people with EDS have for an otherwise untreatable condition. On…
June 30th is World Pneumothorax Day and this year we are urging all doctors to ask about family history if a patient presents with a spontaneous pneumothorax. This one…
Written by Carter Hemion On April 17, 2023, Governor Inslee signed a ceremonial proclamation recognizing May as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder Awareness month in Washington State. The International…
Hello, my name is Megan. I have been diagnosed with postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), small fiber neuropathy (SFN), eosinophilic esophagitis (EOE),…
Make sure to check out Part 1 of the Schroeder family's story before reading further. CURED Currently, the Schroeder family is doing as well as they can to manage and to ensure…
When asked about the key way that the medical field can better serve patients, Pari Schroeder doesn’t waver: multidisciplinary care. She acknowledges that the medical system can often be very…
I recall the day, almost six years ago, when I observed the liveliness of joy in one who paraded around in a pink frilly skirt, smiling with merriment while wearing…
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…
According to a story from Undark, Renee Schmidt's first signs of Ehlers-Danlos syndrome became really noticeable when she was a freshman in college. She would experience brief bouts of memory…
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…
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