I was 24 years old when I was diagnosed with immune thrombocytopenic purpura, a rare blood disorder that involves the immune system destroying the body’s platelets. It wasn’t an easy diagnosis and only came after several alarming calls from my primary care physician and hematologist, dozens of blood draws, countless cross-country conversations with my nervous parents, and a bone marrow aspiration. Before this experience I didn’t even really know what platelets were, and I certainly wasn’t prepared for the fact that a shortage of them could kill me. In other words: It was pretty scary.
In the decade-plus since my diagnosis, I’ve never met anyone else with this disease – which is why I was so interested in hearing today the (happy) story of YouTube star/ITP patient Reagan Claire Smith. The Atherton, Calif. 10-year-old learned of her ITP at a much younger age than I: She was six when the telltale signs of bruising and petechia brought her to Lucile Packard Children’s Hospital, with platelet counts so low that, as her mom describes, “if she was hit in the head, it could result in bleeding to the brain.” As further explained in a release:
Reagan’s treatment included medicines, hospitalizations and chemotherapy. Nothing fixed the problem. Even a paper cut could send her to the emergency room. “This became a more problematic case, so we decided to do something definitive to help her regain her quality of life,” said [hematologist Bert Glader, MD, PhD], also a professor at the Stanford School of Medicine.
That meant removing Reagan’s spleen, the site of platelet destruction. In 2010, minimally invasive surgery expert Sanjeev Dutta, MD, took it out through her belly button in a no-scar procedure. “Since that time, she’s been in remission and has definitely gotten her life back,” said Glader. Reagan’s platelet counts have returned to normal and her activities are no longer restricted.
Today, Smith (like me) is in good health. And the young girl, who first sang publicly when she was seven and has been in numerous singing competitions since, is taking the Internet by storm; her catchy pop tune “I Wanna Know” is a YouTube and iTunes hit.
I love how her mom puts it: “She was once famous for being sick. Now she’s famous for singing.”
Photo courtesy of the Smith family