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Fortville woman’s journey to better diagnose bleeding disorders

INDIANAPOLIS (WISH) — March is Bleeding Disorder Awareness Month, and Kimber Blackwell is using her struggle to educate people about rare blood disorders.

Blackwell is a physician assistant at the Indiana Hemophilia and Thrombosis Center. Blackwell was diagnosed with Von Willebrand disease (VWD) after years of working in medicine.

VWD is a bleeding disorder that affects about one percent of the population. It can cause prolonged bleeding after an injury or surgery, heavy menstrual bleeding in women, and nosebleeds.

Blackwell has the mildest form of VWD, but the affected individuals don’t make any clotting protein in the most severe cases. As Blackwell explains, “Those bleeding symptoms can be much more severe. They have bleeding in their joints from just walking around. They can have bleeding from their gastrointestinal tract that happens without warning or a procedure, and can have more severe bleeding symptoms.”

More than 60,000 people in Indiana are living with a bleeding disorder, but the majority are unaware of their condition. The CDC reports that women with VWD wait an average of 16 years between the onset of symptoms and diagnosis.

Blackwell says it wasn’t until she realized her symptoms matched the patients she was treating for VWD that she sought a diagnosis. “I never had anything that was overwhelming fatigue, but I did notice that I would wake up in the middle of the night when I was on my period and have to change protection in the middle of the night or sleep in a towel. That was when I realized that I am working harder at this than anybody else is. Maybe this is an actual illness,” she says.

Blackwell now advocates Washington, D.C. to help build awareness among Indiana lawmakers to increase funding to support bleeding disorder research and improve access to care.

She encourages anyone experiencing symptoms like hers to seek medical attention and emphasizes the importance of early diagnosis and proper care.