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(HealthNewsDigest.com)-Those living with or caring for someone with a chronic disease know about the challenges of managing the condition on a day-to-day basis. Life with a chronic disease requires special considerations. Hemophilia, a rare inherited bleeding disorder, makes patients predisposed to prolonged bleeding and, in severe cases, can be fatal if left untreated. However, disease management options are available.
Hemophilia is a disease that almost exclusively affects males. People with hemophilia are deficient in one of the key proteins that is needed for normal blood clotting-factor VIII for hemophilia A or factor IX for hemophilia B. Patients with hemophilia need to be careful not to cause injury to their bodies, which can prompt a bleed.
Bleeding in hemophilia can be potentially life-threatening if it occurs in the central nervous system, gastrointestinal system, neck or throat, or is associated with severe trauma. In general, patients should avoid common contact sports like football but many can participate in activities like swimming and cycling. While people with hemophilia do not bleed faster than people without hemophilia, they do tend to bleed longer, exposing them to risk of internal injury. While most people living with hemophilia may be dependent upon factor (protein) replacement therapy their entire lives, a key to managing the disease is to recognize the need to work closely with health care providers, make healthy lifestyle choices, and to follow their prescribed treatment plan.
According to Jonathan, a hemophilia A patient and an active father, it’s important to keep hemophilia in perspective. “Don’t get tunnel vision,” cautions Jonathan. “Don’t get stuck in a place where you feel that hemophilia becomes your identity. Hemophilia is a challenge that’s unique, but it’s not who you are.” Jonathan partners closely with his health care provider to help manage his hemophilia.
While there is no cure for hemophilia, there are several treatment options available to hemophilia patients. It is important that patients discuss a healthy lifestyle and treatment options with a health care provider who commonly treats hemophilia to determine which treatment plan is right for their individual needs. With knowledge, healthy choices and proper treatment, people with hemophilia can help manage their disease. “Don’t let hemophilia be the thing that holds you back,” says Jonathan. “Because you really can do many things-if you put your mind to it.”
For additional information on hemophilia, visit http://www.hemophiliavillage.com.
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