Holding on to Faith and Hope: Leah’s Story, Part 2
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…
Holding on to Faith and Hope: Leah’s Story, Part 1
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…
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…
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…
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…
Source: Pixabay
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…
Source: Pixabay
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,…
Source: Pixabay
Mast Cell Activation Syndrome Can’t Stop This Gymnast
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…
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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…
Source: Pixabay
You Can Help this Girl Expand Her Eating Limitations
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…
How Rare Disease Informed My New “Normal”
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…
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Baby Elliot Faces Down FPIES and Food Allergies Every Day
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…
How I Am Still Breathing
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…
