Companion Ambassador
Tara Keith
Tara Keith is a wife, mother, and grandmother who lives life to the fullest. She was diagnosed with indolent systemic mastocytosis (SM) in her late 20s, but only after living with the disease undiagnosed for 10 years. It wasn’t until the cutaneous mastocytosis appeared in 1999 that she was sent for a bone marrow biopsy. “My entire life was a struggle with no information on mastocytosis available,” she said. “I have a story to tell and I’m looking forward to sharing my journey with all of you.” She can be reached at tara_milby@yahoo.com.
From the Ambassador
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How I try to find the good every day — even when the days are hard
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Summer heat can’t stop me: My new routine to keep active with systemic mastocytosis
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The power of words and a heart full of love: What I learned from my sister
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Even after 25 years, I’m still learning about my indolent SM
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Think visiting Disney with a rare disease is too hard? Here’s my tips to make it happen
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The cost of canceling plans: Feeling shamed when I need support the most
