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Ten-year-old YouTube star: Famous for her singing, not for her illness

Ten-year-old YouTube star: Famous for her singing, not for her illness

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

5 Responses to “ Ten-year-old YouTube star: Famous for her singing, not for her illness ”

  1. Lynn Says:

    You inspire me Reagan!!

  2. Lisa T Says:

    This is a great story, Michelle. Thank you for sharing your own story, too. Onward and upward!

  3. Sandra Smith Says:

    This was SUCH a nice thing for Reagan to read! She has put herself out into the public forum only after much discussion. We are trying to keep this all positive. Would you be willing to go to her You Tube site and leave a positive message? http://youtu.be/f7egKtbQqKA We have just uploaded it onto our family channel and would love some positive comments in connection with ITP, since we are trying to raise awareness of this rare chronic disorder.

  4. Morgan Grant Says:

    I also have chronic ITP. I was diagnosed when I was three. Thankfully, it is easily managed with steriods. I also had never heard of anyone else having ITP!

  5. Bron Says:

    I have had chronic itp for over 16 years and my 5 year old son also has it. There are lots of great facebook groups out there and forums about this disease. Its way way more common than we think.

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