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The 3 Words I'm Celebrating on Rare Disease Day

I was an infant when my mom began to worry about the two words we would come to dread the most: pulmonary embolism. As she researched my diagnosis, Klippel-Trenaunay syndrome (KTS), she noticed those two words often appeared in the literature. “Will we need to watch for blood clots?” my mom asked my doctors in Boston and Dallas.

These specialists, some of whom were known for treating KTS and would later develop CLOVES syndrome, said no. At the time, they thought a pulmonary embolism was only a dreaded complication for those with KTS in their legs.

I was 11 when I proved the specialists wrong. After a few days in the hospital for uncontrollable hand pain, I began wheezing.

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