Riding for a Cause

by on March 7th, 2015
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Kimberly Philo might be a long-time resident of Florida, but this Iowa native and University of Iowa alumni says she is a “Hawkeye” through and through.

“I bleed black and gold,” laughs Kim.

Obviously this is a metaphor showing devotion to her home state and the University of Iowa-but this metaphor has an ironic twist. When Kim bleeds, her blood doesn’t clot. She suffers from hemophilia, a blood disorder that is extremely rare in women. Her true devotion is in bringing support and awareness to people who suffer from hemophilia. She had a chance to do exactly that as she participated in RAGBRAI 2011.

I met Kim and her pit crew; husband Jeff and son Alex, on day seven of RAGBRAI XXXIX under a shade tree in Durant, Iowa, one of the last stops before finishing the race in Davenport, Iowa. Not only did I meet Kim and her family and learn a little bit about this rare blood disorder, but I soon realized that I was witness to a part of a lifelong dream come true.

“RAGBRAI went through my hometown of Sibley, Iowa when I was 14. I had been diagnosed three years earlier.” Kim says she never thought she would be able to participate in the bike ride across Iowa until she met and was inspired by a man with hemophilia and two target ankle joints that climbed a mountain in a week’s time. “I figured if he can climb a mountain in a week, I can certainly ride my bike across the state of Iowa.”

Hemophilia is an inherited bleeding disorder where the blood does not clot properly. Hemophilia is carried on the x-chromosome and is predominately seen in males, affecting about 1 in 5000 male births. It is estimated that around 15-20,000 people live in the U.S. with hemophilia. But hardly any of these symptomatic cases include women. Since the gene is linked to the x-chromosome, women who have hemophilia are carriers of the disorder and that particular gene acts as recessive. “I’m a symptomatic carrier,” states Kim. “For some reason, my body uses the x-chromosome with hemophilia. I only have 2% of factor VIII in my body.” Jeff Philo says that doctors do not usually look for hemophilia in women except in the diagnosis of a son experiencing symptoms. “She (the condition) is so rare, when she goes into hospitals doctors want to meet her,” says Jeff. “It may be the only time in their lifetime as a doctor that they do so.”

“I injured my knee before I knew I had hemophilia.” Kim says when she was 11 years old she hit her knee on some playground equipment. The joint swelled, and after aspirating the joint with no success, orthoscopic surgery was ordered. It wasn’t until a blood work-up was done the day before the scheduled surgery that doctors noticed the blood was not clotting like it should. After going through a series of specialists, Kim was diagnosed as a hemophiliac.

Jeff explains that when you are injured, your body goes through a multi-stage process to stop the bleeding. These stages build together to form a clot, but in hemophiliacs, one or more factors is missing and the process falls apart and begins all over again, without clotting.

Kim’s target joint is in the knee. A target joint in hemophiliac cases is any joint that is affected over and over. Her treatment includes replacing the clotting factor VIII that she is missing through IV injections. “A lot of hemophiliacs that are severe or moderate need to treat themselves every other day just so they can manage their life.” Kim utilizes these treatments when she knows she will be exerting herself. She needed to do so each morning of RAGBRAI-a journey she embarked upon as a way to bring awareness to hemophilia, and teach hemophiliacs that they need to be active to remain healthy.

“When I was growing up, hemophiliacs were basically told to sit around and not do anything to protect their joints.” Studies have evolved over the years debunking the old way of thinking. “We now know that it is important to be active and take care of the muscles around your joints. The more active you are, in fact, the better it is for your joints.”

Kim hopes to be an advocate and encouragement for people living with hemophilia. She shares her story and her adventure in bicycling across the state of Iowa in a fun video documentary.

To view this video, click on the link: 2011 RAGBRAI-Kim’s Bike Ride Across Iowa


Kimberly and Jeff Philo

Centers for Disease Control and Prevention

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