Patients with FOP, a grim genetic disease, see hope on the horizon

M ost of the time, Whitney Weldon doesn’t think about her second skeleton. She was 9 the first time it really flared up. Bridges of bone grew from nowhere to freeze her right arm at a 120-degree angle, an excruciating experience that felt “like your bones are trying to come out of your skin,” she said. A decade later, her second skeleton sprouted struts of bone that locked the other arm in place, this time at 180 degrees.

Read the source article at statnews.com

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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