
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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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
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I’m living my best life, even if it’s now from the back of the plane
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Finding new hope: My trip to Boston to attend the WODC 2025
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Facing a shortage of medication when you need it most
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I didn’t know SM could cause osteoporosis. Neither did my doctors