Women Also Bleed: Women + Hemophilia

By Eliana Osborn

About 99% of those with the bleeding disorder hemophilia are men. Which can sometimes mask diagnosis of bleeding disorders in women.

Women with symptoms of bleeding disorders often think they just have low iron when they bruise easily or just dismiss heavy periods as part of life.

Hemophilia is a gender-linked disease, meaning it is transmitted on the X chromosome that comes from the mother. Like color blindness, hemophilia is primarily found in men—not always, but most commonly. Women are carriers of the gene and sometimes have low-key symptoms that aren’t noticed for a long time, because of their gender.

But women can be affected by bleeding disorders (though rarely full-blown hemophilia due how it’s genetically linked). Thanks to today’s connectivity, however, women with bleeding disorders don’t have to feel alone –and can be more easily diagnosed through nationwide networks of caregivers and support networks specially tailored to their needs.

Women with hemophilia or other bleeding disorders typically are treated with different medications than men with the same disease. Every hemophiliac needs to receive clotting factor — the substance their blood is missing that prevents us all from “bleeding out” when we receive an injury.

For women, birth control pills or other hormone therapy can help control menstrual bleeding so that there aren’t monthly crisis events.

Women may not have hemophilia A or B nearly as commonly as men, but they can have any of the rarer types of the disease. Blood has many different clotting factors in it (each given a number, and A and B have different clotting factors); people missing even one clotting factor will have symptoms of bleeding disorders. These deficiencies are all possible in both women and men.

SIGNS AND SYMPTOMS

According to the National Institutes of Health, these are the signs women often report that may signal a bleeding disorder. Without genetic testing, it is impossible to correctly diagnose what specific disorder that may be — hemophilia or another condition.

• A period longer than 7 days
• Period clots larger than a quarter
• Heavy period bleeding when you have to change a pad or tampon more than once an hour on the heaviest day
• Low iron levels
• A family history of a bleeding disorder
• Heavy bleeding from dental surgery
• Nosebleeds that require medical attention
• History of muscle or joint bleeding
• Bleeding from a small wound that lasts more than 15 minutes

Heavy periods can signal other problems, not just bleeding disorders. No matter what, they are a symptom that should be checked out by a doctor—who may not be familiar with bleeding issues. That’s why you should be especially sure to mention any family history.

VICTORY FOR WOMEN

The National Hemophilia Foundation has a targeted initiative for women with bleeding disorders, Victory for Women. The goal is to educate doctors and patients about these conditions — in particular hemophilia A and B or von Willebrand disease (another clotting disorder). Without proper diagnosis, women and girls are at serious risk of death. Worldwide, bleeding issues are something rarely talked about. Even in the United States, too many medical professionals don’t take women and girls seriously when they complain about gynecological issues. So V4W, as this initiative is known, is trying to change the situation.

NOT ALONE

A recent collection of patient stories in the New York Times, as well as the Victory for Women’s website, are opportunities for women to see that others are living full lives despite their bleeding disorders. There are more than 50 hematology (blood) centers around the country, most with support groups. It isn’t just women who have bleeding disorders — many are parents to children with hemophilia, learning to given injections and manage risk.