Growing up with von Willebrand disease (VWD) hasn’t always been a picnic for Adelaide Yost. At age 5, she experienced multiple spontaneous bleeds and received blood transfusions that helped save her life. “We were fortunate that blood was available to treat our daughter,” her mother, Katie, says.
At age 8, Adelaide began attending Camp Klotty Pine, which is geared toward children with bleeding and clotting disorders. It was there that Adelaide learned how to self-infuse the factor products that her blood lacks. “She’s a pro; she just jumps right in. She’s in complete control over the infusions,” Katie says. “Camp is the biggest, most amazing thing in her life. She looks forward to it every year.”
More recently, Adelaide has experienced excessive bleeding that cannot be managed by prophylactic treatments alone. The team at Versiti Comprehensive Center for Bleeding Disorders (CCBD) has worked with Adelaide to try different medications and treatment approaches.
“Admittedly, it was a really difficult time. She was dealing with excessive bleeding in the elementary school environment. Then, as she entered middle school, we had to work with them on certain accommodations. It’s embarrassing at that age, but it’s the reality of what we had to go through,” Katie says. “But she has come out of that additional challenge in her life with everybody’s help and support. Once we figured everything out, it’s been smooth sailing.”
Adelaide hasn’t let her disease slow her down, playing the violin in the orchestra, trying light sports like volleyball, and traveling with her family. “Traveling has been interesting; I’ve gotten caught up at security many times with the medication,” Katie says. And an upcoming multi-day, out-of-town school trip will be Adelaide’s first time managing her infusions without her parents or a medically trained professional alongside her. “This will be her first time going it alone,” Katie says. “It’s that time in her life when she’s starting to get offered these opportunities, and we never want to say no just because she has a bleeding disorder. But we have to figure out what accommodations are necessary in order for her to branch out and take this leap of independence.”
Katie credits the medical team and support staff at Versiti CCBD with helping her family to overcome these obstacles and ensure Adelaide has a bright future. “As much as you plan and prepare, the unknown is scary,” she says. “Working with the team and the doctors, getting appointments, trying different things, following up, checking in—it’s been reassuring to know that if something isn’t working, they support us and help us understand the next steps. They’re so responsive.”
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