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),…
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…
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…
I'm Celeste, and I'm sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it. Being chronically ill is like (for lack…
It all started with extreme allergic reactions around her mouth when eating certain fruits, then overtime she grew to become allergic to just about everything, even her own tears and…
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…
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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
