“Yes, I Have ITP and I’m Doing Great!”

Melissa Hilsabeck won’t let ITP keep her from living life to the fullest.

Melissa Hilsabeck loves to talk to kids with ITP. “Look at me!” she tells them. “I am proof that ITP doesn’t have to hold you back!” Indeed, the soon-to-be civil engineer deals with a rigorous curriculum, leads a PDSA support group in Orange County, CA, and runs the “kids’ camps” at PDSA conferences. Even with ITP, says Melissa, “You can achieve anything!”

Diagnosis: ITP
Yet about three years ago, Melissa wasn’t nearly so optimistic. Out of the blue, she discovered inexplicable bruises on her shins and on the back of her arms. She’d played volleyball, but that couldn’t have caused the bruises, right? “Two weeks later, they still hadn’t gone away!”

She had blood work done, and the next day, her phone rang at 8 am: “It was my doctor: Your platelets are low. Go to the ER right away—they’re expecting you.” That’s when she learned she had a blood clotting disorder called ITP.

A roller-coaster ride to the right treatment
Fast-forward three years. Melissa has run the treatment gamut, starting with a steroid and even resorting to a splenectomy, which failed to stop the destruction of platelets. Hospitalized twice during her time at college, she dropped out of volleyball and began saying “no” to social invitations. “You don’t want to explain to people why you can’t do things,” she says. On top of that, her moods and vitality suffered. “One day, I’d have so much energy I could hardly sit still in class. The next day, I’d wake up so exhausted I could hardly get out of bed.” After a platelet crash that left her numbers at 0, Melissa received a platelet transfusion and began a new treatment. And, finally, success!

It’s taken perseverance for Melissa to find what worked for her.  Here are her tips for thriving with ITP:

Educate yourself about ITP
Hoping to learn more about the disease, Melissa attended the 2011 PDSA conference in Boston—and she still keeps on top of treatment developments. Staying current helps her have informed discussions with her doctor.

Find strength in others
At the conference, says Melissa, “I met all these other people with ITP and they were laughing and smiling. It was like a slap in the face. I asked myself, Why are you being so negative? Talking to others—that’s when my ‘poor me’ attitude began to lift.”

Be conscientious about your medical follow-up
Melissa goes for blood work every four months. Without fail. “I write it on my planner and send myself a reminder with my phone,” she says.

Stay upbeat
“The more your mind-set is down and out—you’re always moaning, Why did this happen to me?—the more ITP will affect you and the worse you’ll feel. I refuse to let ITP dictate my life!”

Published March 2014

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