Monthly clinics help patients manage blood disorders
CHARLESTON, W.Va. -- While a bleeding disorder was once considered a death sentence, improved medical techniques now allow patients to live long and healthy lives.
Dealing with hemophilia and similar diseases still is not easy for individuals with the disorders. That's why 30 years ago Charleston Area Medical Center began offering monthly clinics for those patients.
Donna Arden has served as CAMC's nurse coordinator of hemophilia services for the last 17 years. She hosts two monthly clinics, one for adults and one for children, to help patients and their families work through any issues they have related to their bleeding disorders.
Human blood contains 13 proteins called "factors" produced by the liver, and each of those factors help form clots when the body is injured.
Blood cannot clot, however, if one of those proteins is missing. The problem can be temporarily remedied, however, if the missing proteins are injected into patients' bloodstreams.
One of the things Arden teaches patients at her clinics is how to inject this "factor" themselves. Many are squeamish, but learning to administer factor cuts down on doctor and emergency room visits and allows patients to manage their bleeds better.
Knowing how to inject is particularly important for younger, more active patients. They're more likely to get bleeds, Arden said, so many inject two or three times each week to prevent bleeds before they start.
Arden strives to help her patients lead normal lives despite their conditions.
"I will not let them use the word 'disabled' in the clinic. It's not a word that's in my vocabulary," she said.
The monthly clinics include vocational rehabilitation specialists who work with patients to get and keep jobs as well as social workers who help patients and their families handle insurance issues. Factor is incredibly expensive, costing several thousand dollars per dose, and many people have difficulty finding ways to pay for it.
The hospital also provides physical therapists at each month's clinic.
Individuals with severe disorders can develop spontaneous bleeds in their joints, often from simple actions like walking across the room. These joint bleeds can lead to deformation similar to those caused by rheumatoid arthritis.
At the clinics, physical therapists test patients' joints, recommend exercises and arrange for physical therapy, if needed. They also can refer patients to orthopedic surgeons who specialize in patients with bleeding disorders.
Amy Brown of Pocatalico has two teenage sons with mild hemophilia. The family has frequented CAMC's hemophilia clinics since the boys, now 17 and 15, were babies.
Brown found out her oldest son, Marshall, could have hemophilia when she was seven months pregnant. Her father and uncles also had the disease, and she is a carrier. By the time Marshall was 6 months old, test results confirmed he had a bleeding disorder.
Now, the family attends CAMC's clinics once a year.
"My kids don't consider it a disability," Brown said.
Marshall, a senior at Sissonville High School, recently had to write an essay for a college application. The prompt asked him to write about some adversity he had overcome in his life.
"He said, 'I can't think of anything,' " Brown said. "It's great that my son doesn't consider it a disability or a hindrance. And it's just a part of who he is."
Growing up wasn't always easy for Brown's sons, however. While Marshall liked staying in the house, younger brother Harrison was more rambunctious. He tried to play baseball in elementary school, but he kept spraining his ankle, and that led to internal bleeds.
"He realized he couldn't do it," she said.
It hasn't been easy for the mother, either. She worried every time her sons played touch football in the park near their home, or even had a snowball fight.
"Snowballs freak me out. My uncle died from getting hit with a snowball with a rock in it. He died in my dad's arms," she said.
But Brown said her sons have learned to deal with their disorder. They don't fight. They know they can't play contact sports. Marshall started injecting his own factor about six months ago and now does it for Harrison, too.
"My kids have to learn to deal with their hemophilia within the realm of the world," she said. "In the real world, people aren't going to make exceptions for them."
CAMC's hemophilia clinics have been a large part of that learning process, she said.
"Donna Arden has been a blessing in our family," Brown said. "She has counseled, she's given advice, she's absolutely been a blessing."