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),…
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…
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…
Super T’s Mast Cell Foundation was created in 2015 by my daughter Taylor upon receiving her diagnosis of mast cell activation disorder. After traveling over twenty hours to consult with…
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…
28-year-old Melissa Loewen has always enjoyed helping others. It was this spirit of community that led her to a nursing role in the BC Women’s Hospital's NICU. But a few…
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…
What Exactly is Mast Cell Disease According to The Mastocytosis Society (TMS), there are three forms of mast cell disease. All involve the malfunction or over-development of mast cells in…
This is part 2 of Leah's story, click here to read part 1 Leah listened as the doctor explained that her body couldn’t continue to be overexposed in addition to…
As Leah approached her late twenties she was, in her own words, a “tank.” She kept up with her ex-Marine husband’s work outs and ran every day. She was the…
Facebook has been making changes to how content will be shared on people’s newsfeeds. These are designed to help users connect more with friends and family, and limit the number…
Hannah Evans, a 27-year-old woman from South Wales with several rare diseases, has reached her £37,500 fundraising goal that will support her trip to America to access an experimental and…
My name is Lindsay Fogarty. I am a 25-year-old single mother to a wonderful 6, almost 7-year-old son, named Andrew. As I am writing this I am listening to the…
I know you’re fighting hard//I see your battle scars It’s clear you’ve come so far//You’ll grow stronger Alone, these words may feel like just expressions of encouragement; a…
The Mastocytosis Society is an amazing organization that brings focus to patients with mastocytosis and mast cell activation diseases. They hope to bring awareness, as well as education to patients,…
Natasha Coates has a lot more to be cautious of than most people. Anything she eats or drinks could be lethal. She’s even allergic to her own hair and tears…
For Johanna Watkins, a woman from Minnesota, life can be like walking through a minefield. Ms. Watkins had mast cell activation syndrome. As a result, exposure to everyday experiences such…
Lily Mason, eight, saw her community uniting in support of her rare disease that only limits her eating to nine safe foods. The disease is called Mast Cell Activation Syndrome…
If you passed me as a stranger on the street, you would never guess that there was a point in time that I road tripped around the U.S. and picked…
Food allergies are nothing new. For two decades, the portion of children with a peanut allergy has essentially tripled. Eggs. Soy. Wheat. Fish. Onions... They’re all common food allergies. Besides…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
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