"It’s critical that people with VWD learn about the importance of exercise, fitness and stress management."
von Willebrand disease (VWD) Type 2A
(Antihemophilic Factor/von Willebrand Factor Complex)
With a love for the outdoors and physical fitness, last year alone, Jenn Koles cycled more than 4,000 miles (6,437.376 kilometers) – a distance greater than New York City to Paris, France – and peddled up hills and mountains totaling more than 330,000 feet (100,584 meters) – or more than 11 times the height of Mount Everest.
"When I am outdoors, I enjoy the ability to get away and be in an open space to explore and smell fresh air," Jenn, who lives in the United States, said. "I feel like there is an unlimited area for me to enjoy when I’m on the bike and cycling helps me get away from stress."
One source of stress in Jenn’s life is von Willebrand disease or VWD.
von Willebrand disease is the most common hereditary bleeding disorder, affecting about 1 percent of the population. Caused when von Willebrand factor, a protein in the blood that is necessary for clotting, is either missing or not working properly, VWD is equally likely to affect men and women.
"I had multiple surgeries before I was 18 that all resulted in severe bleeding," Jenn said. "It was not until I went for a consult to have my wisdom teeth removed, at the age of 18, that tests were completed to determine that I had a bleeding disorder."
Jenn manages von Willebrand disease 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.
"Accidents happen, but knowing a treatment that works for me is available, allows me to enjoy my outdoor activities without too much worry," Jenn added.
When not on the bike, Jenn enjoys snowboarding, snowshoeing, hiking, rock climbing and writing about the outdoors. She also serves as a member of the VWD Consumer Advisory Board for CSL Behring, where she shares her story with women and men who are managing VWD.
"It’s critical that people with VWD learn about the importance of exercise, fitness and stress management," Jenn added. "In life, my goal is to be as happy and as healthy as I can."
*BEFORE ENGAGING IN ANY TYPE OF PHYSICAL ACTIVITY, ALWAYS CONSULT WITH A HEALTHCARE PROFESSIONAL TO MAKE SURE THAT THE ACTIVITY IS RIGHT FOR YOU.
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