Mary DeArmond
Growing up in a small town in Indiana (US), Mary DeArmond exhibited many of the signs and symptoms of a bleeding disorder. From easy bruising to prolonged bleeding following a minor cut, Mary’s family realized something was wrong early on.
"When I was in school I would always come home with bruises and scrapes that wouldn’t stop bleeding," Mary said. "My dad would often talk to me about not running on the playground to try and avoid a bleed, but for me, that wasn’t possible."
Throughout her childhood and teens, Mary continued to show signs of a bleeding disorder. She experienced heavy, prolonged menstruation and a long healing period after having her wisdom teeth removed.
When I was a child, I twisted my ankle during gymnastics, and this incident still affects me decades later," Mary said. "The injury led to a joint bleed that caused permanent arthritis damage, making it extremely painful for me to move around."
It wasn’t until she was 22 years old that Mary was referred to a hematologist who diagnosed her with Type 3 von Willebrand disease (VWD).
VWD is the most common, yet least diagnosed, bleeding disorder, affecting about 1 percent of the population. The disorder is caused by a defect or deficiency of a blood protein called von Willebrand factor (VWF). Type 3 VWD is usually the most severe form, caused by circulating blood having no VWF at all.
Nowadays, Mary manages her condition with Humate-P® (Antihemophilic Factor/von Willebrand Factor Complex) from CSL Behring. This von Willebrand factor replacement therapy restores the clotting factor missing from her blood.
"After discovering I had VWD I became hungry for knowledge and began reading every piece of information available about the condition and its treatment," Mary said. "I think it is extremely important for people with VWD and their families to learn about the disorder and to advocate for themselves or their children."
She added, "It’s crucial to have the ability to rationally and calmly explain to nurses and doctors information about VWD and how you manage your condition. Especially in an emergency setting that is not near your local treatment center."
Because of her desire to help others, Mary serves as a member of the VWD Consumer Advisory Board for CSL Behring. In this role, she shares her story with women and men who are managing VWD.
"When I first meet people who have been diagnosed they’re a little scared," Mary said. "But after hearing what I’ve been through and that the condition is manageable they often feel a sense of relief."
Now in her mid-40s, Mary enjoys boating with her family and watching her teenage son play baseball.
"Because VWD is hereditary, my son was tested for the condition and has been diagnosed with Type 1," Mary said. "I constantly remind him that even though it won’t be easy, he can live a productive and normal life with the disorder."
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