This patient story was contributed by the Marfan Foundation. ### CONTENT WARNING: This patient story focuses on a detailed account of fatal childhood aortic dissection. It is shared to save…
Written by Virág Hazai, an Ehlers-Danlos Syndrome patient advocate living in Hungary. ### My name is Virág, and I'm a university student with Ehlers-Danlos syndrome (EDS). I would love to…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
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…
2023 Hybrid Global Learning Conference August 2-5, 2023 The Ehlers-Danlos Society is delighted to announce 2023 Global Learning Conference will be a hybrid event, taking place in Dublin, Ireland from…
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…
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),…
2023 EDS ECHO Summit: Hypermobility Spectrum Disorder (HSD) Virtual Conference April 1-2, 2023 The EDS ECHO Summit Series event will be a two-day virtual event that will take place on…
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…
The XV International Conference on Rare Diseases-D'Genes was streamed in sixteen countries in April 2022. Juan Carrión, D’Genes President, announced that the theme for 2022 is Equity and Rights…
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…
2022 International Scientific Symposium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Community Day EDS & HSD Untangled: Ask The Experts---A Hybrid Conference September 18, 2022 The Ehlers-Danlos Society is…
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…
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