INDIANAPOLIS (WISH) — One Fortville family is working to raise awareness of rare bleeding disorders during Bleeding Disorders Awareness Month with the hope of getting attention from lawmakers.
Kimber Blackwell and her daughter, 14-year-old Kate Blackwell, have Von Willebrand disease. It’s a bleeding disorder where people are missing or low in the clotting protein von Willebrand factor, or the protein doesn’t work as it should.
Von Willebrand disease is the most common blood disorder in the U.S. Most of the 3.2 million Americans who have it are born with it after having inherited it from one or both parents, says the CDC.
But others, like Kimber Blackwell, don’t see the warnings signs — including frequent nosebleeds, abnormal or easy bruising, and excessive bleeding of the gums — until later in life.
Blackwell is a physician’s assistant at the Indiana Hemophilia and Thrombosis Center in Indianapolis. She says she worked with patients with rare bleeding disorders for years before she realized her symptoms matched Von Willebrand disease.
Blackwell says her daughter, Kate, was diagnosed when she was in kindergarten after a volleyball to the face and a nosebleed that wouldn’t stop.
To try and draw the attention of lawmakers to Von Willebrand disease and other bleeding disorders, the mother-daughter duo recently took part in an event called Washington Days, hosted by the National Hemophilia Foundation.
During Washington Days, the Blackwells and other Americans with inherited blood disorders met virtually with lawmakers to try and increase funding for bleeding disorder research and improve access to care.
“I think it’s just important to share your story, especially when you have some medical condition that is not common,” Kimber Blackwell said. “It really just gives a face and a personal story and a personal touch to lawmakers, to be able to see how having a bleeding disorder impacts everyday life.”
The Indiana Hemophilia and Thrombosis Center says more than 60,000 people in Indiana are living with a rare bleeding disorder, such as Von Willebrand disease or hemophilia, and the majority are unaware. Learn more and find out the symptoms at the IHTC website.