Debunking the Myths about Hemophilia

Debunking the Myths About Hemophilia

Debunking the Myths About Hemophilia

Myths or half-truths abound about hemophilia, a largely congenital condition in which blood clotting is impaired. Click through to read about the salient myths and find out the truth.

Myth #1: Only males have hemophilia.

Myth #1: Only males have hemophilia.

Because the gene for blood clotting is on the X chromosome, the vast majority of patients with hemophilia (from the Greek “hemo” for blood, and “philia” for love) are males. However, some women who are “carriers” of hemophilia do have symptoms of the condition. According to the World Federation of Hemophilia, women with levels of 40 to 60% of the normal amount of clotting factor VIII (hemophilia A, the most common form), or clotting factor IX (hemophilia B) can experience abnormal bleeding and are called “symptomatic carriers.” These women may need contraceptive pills to control menstrual bleeding and are at risk of serious bleeding after childbirth.

Myth #2: Hemophilia cannot be cured.

Myth #2: Hemophilia cannot be cured.

Although it is true that hemophilia has always been considered a lifelong condition, recent encouraging clinical trials have shown that gene therapy can alleviate the symptoms, a least for a short period of time. Biotech companies including Spark, which has gene therapy for hemophilia and BioMarin, which has gene therapy for Hemophilia A, are doing final-phase clinical trials. An article in the New York Times by Gina Kolata notes that Pfizer “is taking over the development of the Spark drug.”

Myth #3: Only people born with hemophilia have the condition.

Myth #3: Only people born with hemophilia have the condition.

Although most hemophiliacs inherit the condition, some people later in life develop “acquired hemophilia” (AH), an autoimmune disorder. The National Organization for Rare Disorders (NORD) reports that AH happens when the immune system “produces antibodies that mistakenly attack healthy tissue, specifically specialized proteins known as clotting factors, most often clotting factor VIII.”

Myth #4: Hemophilia is always severe.

Myth #4: Hemophilia is always severe.

Many people with hemophilia do have the severe form of the condition, resulting from less than 1% of clotting factor in the blood, but others have moderate form (1% to 5% clotting factor in the blood), and still others have a mild form (higher than 5% clotting factor in the blood).

Myth #5: Hemophiliacs must suffer with great pain throughout their lives.

Myth #5: Hemophiliacs must suffer with great pain throughout their lives.

While people with hemophilia do have pain when abnormal bleeding affects joints – fortunately, with some care, it can be kept at bay. The site Living with Hemophilia shares that the most effective way to deal with pain is prevention. Hemophiliacs can learn to avoid specific strenuous physical activities that might twist or otherwise impair a joint, and also to get help immediately if a bleed occurs. As well, appropriate exercise and the use of mobility devices can go a long way toward alleviating any chronic pain that may occur.

Myth #6: Even minor cuts can cause prolonged, profuse bleeding for hemophiliacs.

Myth #6: Even minor cuts can cause prolonged, profuse bleeding for hemophiliacs.

Despite what we might think, a cut or minor wound is usually not a big deal for a person with hemophilia. The Mayo Clinic advises that hemophiliacs who get minor cuts can treat them in much the same ways as other people can, albeit with extra attention to pressure around the site of the cut. The first aid steps include using pressure and a bandage and using an ice pack. As always, cuts should be cleaned, dressed with antibiotic ointment, and covered with a band aid to prevent infection. In the event that there is a small cut in the mouth, ice pops can be used to help slow down minor bleeding.

Myth #7: Hemophiliacs can’t enjoy a good quality of life.

Myth #7: Hemophiliacs can’t enjoy a good quality of life.

Although hemophilia has no cure, those with the disease can lead productive lives, marry, and have children. There are ways to manage the disease and avoid bleeding episodes – which can improve quality of life, including exercise, practicing good dental hygiene, and avoiding certain medications. As well, choosing a profession that doesn’t require heavy lifting or excessive physical movement can help support a higher quality of life for someone with hemophilia.

Myth #8: Hemophiliacs are destined to die young.

Myth #8: Hemophiliacs are destined to die young.

While this may have once been the case, today, with proper diagnosis and treatment, hemophiliacs today can look forward to a normal or nearly normal lifespan. The World Federation of Hemophilia says that the life expectancy of people with hemophilia varies. Although it is true that hemophiliacs who don’t get adequate treatment may die before they reach adulthood, those who have good care from childhood on can look forward to a normal life expectancy.

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