The story of JANINE

One year ago today, I went to the allergist, wanting to know if I had developed an allergy. For the past year and a half, my body had started reacting randomly to foods. Sometimes I would have itchy lips, a persistent runny nose, or hives that appeared without warning. Some days, I was in so much intestinal pain that I couldn’t even stand.

My allergy test came back negative, so they began to run other tests. As my lab results came in, nothing was making sense. My doctor mentioned she would like to test my tryptase levels. They came back high. She tested again, higher. Again, even higher. She explained that this could be the reason I was experiencing all these random reactions and that I might have an issue with my mast cells. “We think it could be HATS, so we need to do a genetic test.”

“What? Genetic? HATS? I don’t even wear hats!”My DNA was sent to Texas, and the months-long waiting period began. Being a Google fanatic, I researched every mast cell disease, autoimmune issue, and histamine intolerance possibility. Convinced, “I don’t have a genetic disorder.”By February the results have arrived. Before I open them, I know. Hereditary Alpha Tryptasemia.

The rage, grief, sadness, and relief all hit me at once, some emotions lasting longer than others. What does this mean for the rest of my life?

As the months roll on, and the anger subsides, I start to show my body more love. I learned to navigate the meds and the side effects that come with them. I advocated for myself and made lifestyle changes that helped me enjoy living again.

So if you were to ask me today how I feel about it, I’d say, “I look pretty good in HATS.”