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ts 3,0 ophilia Like hem isorder. It affec equally—yet it is d en bleeding —men and wom D results from W ns America er diagnosed. V g VW-factor— d in n widely u or malfunction telets to clump. ed pla decreas activates severe: t a h t in o e the prot ary from mild t v s m Sympto bruising eeds y s a e • bl se nose u f o r p • dy gums ds • bloo enstrual perio ymptoms, m y es • heav experience thes t V WD u • If yo ur doctor abou for all exist ask yo options tion t n e m t a ondi • Tre of the c s e e r g e d
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in Hist Did you ory know th at Engla Victoria nd was a ca rrier of ’s Queen hemop of her n hilia B? Three ine chil dr passed t he gene en to descend ents in the royal bl oodline s o German y, Spain f and Russia— inc Alexei N luding little iko He died son of t laevich, at 13—a c h e last ts asu the Bols ar. hevik Re alty of volution not his , hemophil ia.
3
SCARY BLEEDS
BOYS WILL BE BOYS
Blunt trauma can cause life-threatening internal bleeding for anyone. The condition that hemophiliacs face more commonly, however, is spontaneous hemorrhaging into the joints, muscles or tissues. Joint bleeds cause lots of inflammation, pain and cartilage damage; frequent bleeds can result in crippling arthritis. Cody recently endured a spontaneous bleed. “I felt tension, pressure and heat in my wrist, like a weight was taped to the joint,” he says. Jeff describes bleeds as “suddenly being very aware of a certain part of your body, in an uncomfortable way.” The key to successfully treating a bleed is early intervention; the missing clotting factor must be infused into the bloodstream. Prior to the 1990s, hemophiliacs received transfusions of blood or plasma that placed them at increased risk for exposure to hepatitis C or HIV. Modern treatment involves in-home intravenous infusions of synthesized factor concentrates. These infusions are safe and effective, though short-lived and expensive. Jeff, Cody and Brady use Factor VIII concentrate. “Growing up, Mom insisted that we assume many aspects of our medical care,” Jeff says. “I was infusing myself with factor from the time I was 6. Thanks to my mother, I can hit a vein in my sleep.”
Lori and her husband raised their sons with the mantra, “You have hemophilia, but hemophilia does not define you.” Each year she sent the boys up north to the summer camp sponsored by the Hemophilia Foundation of Minnesota and the Dakotas. “Archery and boating were a blast,” says Jeff, “but the best part was the camaraderie with kids who shared the same condition and experiences that we did.” Although Lori encouraged her sons to lead active lives, she drew the line at contact sports. The strapping boys begged to play football and hockey, but no doctor would agree. So Jeff channeled his energy into four-wheeling and stock car racing. “Probably not the safest hobbies,” he chuckles, “but I refused to let hemophilia rob me of opportunities.” Currently Jeff manages his hemophilia with one or two infusions per month. He admits to three highway accidents in which factor concentrate has saved his life. Cody loves riding his CBR600 motorcycle but tries to approach life with a risk-management mentality. “If I plan to run a 5K with my girlfriend, or visit friends out of town, I’ll infuse factor before going,” he says. “It takes 15 minutes, and I get two days of protection.” Lori trusts her sons’ judgment, saying, “It goes to show that when people with bleeding disorders have access to proper training and treatments, they can lead active and healthy lives.” C.G.Worrell is a freelance writer and part-time veterinarian at Heritage Pet Hospital.
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March/April 2015 RWmagazine.com