INDIANAPOLIS (WISH) – A Fortville family is working to raise awareness of rare bleeding disorders during Bleeding Disorders Awareness Month in the hopes of getting some attention from lawmakers.
Kimber Blackwell and her daughter, Kate Blackwell, 14 years old, have Von Willebrand disease. It is a bleeding disorder in which people have low or low von Willebrand factor of the clotting protein or the protein does not work as it should.
Von Willebrand disease is the most common blood disorder in the United States. Most of the 3.2 million Americans with it were born with the disease after inheriting it from one or both parents. CDC says.
But others, like Kimber Blackwell, don’t see the warning signs — including frequent nosebleeds, unusual or easy bruising, and excessive bleeding gums — until later in adulthood.
Blackwell is a physician’s assistant at Indiana Hemophilia and Thrombosis Center in Indianapolis. She says she worked with patients with a rare bleeding disorder for many years before she realized her symptoms were consistent with Von Willebrand disease.
Blackwell said her daughter, Kate, was diagnosed while she was in kindergarten after a volleyball hit in the face and a nosebleed that wouldn’t stop.
To try to draw lawmakers’ attention to Von Willebrand disease and other bleeding disorders, the mother-daughter duo recently attended an event called Days in Washingtonhosted by the National Hemophilia Foundation.
During the Washington Days, the Blackwells and other Americans with an inherited blood disorder virtually met with lawmakers to try and increase funding for bleeding disorder research and improve access to the epidemic. care service.
“I think it’s important to share your story, especially when you have some uncommon medical conditions,” says Kimber Blackwell. “It really just gives a face and a personal story and a personal touch to the legislators, to be able to see how the bleeding disorder affects everyday life.”
The Indiana Center for Hemophilia and Thrombosis says more than 60,000 people in Indiana are living with a rare bleeding disorder, such as Von Willebrand disease or hemophilia, and most don’t know it. Learn more and find symptoms at IHTC website.