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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How Changes to Facebook’s Algorithm Might be Affecting Fundraising and Awareness Pages

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…

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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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Raising a Son While Managing POTS, EDS, and Gastroparesis: Lindsay’s Story
Photo courtesy of Lindsay Fogarty

Raising a Son While Managing POTS, EDS, and Gastroparesis: Lindsay’s Story

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…

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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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The Mastocytosis Society Hosts Support Group Meetings Around the Country
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The Mastocytosis Society Hosts Support Group Meetings Around the Country

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,…

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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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