My Life with Rare Chronic Illnesses
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My Life with Rare Chronic Illnesses

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),…

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Finding an Effective Personalized Therapy for Mastocytosis can be Frustrating, but it is Possible

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…

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Meet Hannah: a 27-Year-Old with EDS, POTS, MCAS, and Blood Cancer Fundraising for Treatment in the USA

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…

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Braving the Storm: How Music and Family Helped Tara Get Through a Tough, Rare, Little-Known Disease
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Braving the Storm: How Music and Family Helped Tara Get Through a Tough, Rare, Little-Known Disease

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…

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Why Has This Woman Lived Alone For Two Years? The Answer May Surprise You
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Why Has This Woman Lived Alone For Two Years? The Answer May Surprise You

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…

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