Living with hemophilia a challenge
Steve Dorfman
When former Fox News Chairman Roger Ailes died this month after suffering a fall that caused a fatal brain bleed, many of us were surprised to learn that the controversial 77-year-old had hemophilia (which the Palm Beach County Medical Examiner said “contributed to his death”). But not Debbi Adamkin. No, as the executive director of the Florida Hemophilia Association since 2005 — and passionate advocate for all hemophiliacs and their families — the Fort Lauderdale resident makes it her business to know such things.
“He made brief mention of it in a book a few years ago,” Adamkin said.
Indeed, there’s a passage from 2013’s “Roger Ailes: Off Camera” by Ze’ev Chafets in which Ailes is quoted as saying, “Because of my hemophilia, I’ve been prepared to face death all of my life.”
For Adamkin, hemophilia — an inherited bleeding disorder in which the blood does not clot properly — is a deeply personal issue, and has been since 1994 when her second child, Corey, was diagnosed with severe hemophilia a few days after being born.
“He began hemorrhaging after his circumcision.”
And thus began for Adamkin and her family their existence with this exceedingly rare condition.
The reality of hemophilia
If you’re a history buff, you know Russian Tsar Nicholas’ son was a hemophiliac. Maybe you knew that Richard Burton was a hemophiliac, and that Abraham Lincoln and Mother Teresa were said to be hemophiliacs.
But in the last 30 years, the hemophiliac with whom many people are most familiar was Indiana schoolboy Ryan White, who, at 13 in 1984, was diagnosed with AIDS — and temporarily barred from attending public school — after having received unscreened blood transfusions. By the time he died in 1990, he’d became an international symbol for tolerance and understanding about AIDS.
For Adamkin, as soon as she learned of Corey’s condition, she knew “I had to attack it head on.”
She learned everything she
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