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.