Living (and living well) with hemophilia B
CHILDREN • TEEN • ADULTS • WOMEN BLEEDERS • SENIORS
Children
Children with hemophilia may face frequent medical procedures and complications. Medical issues range from serious, requiring hospitalization, to routine, requiring frequent venipuncture. Medical treatment may be traumatizing, impact children’s social lives, or limit their ability to fully participate in family, school, and community activities.
Teens
Adolescence is complicated. Teens with hemophilia B face the normal developmental milestones of changing hormones and dealing with great pressures to conform. Some adolescents may have a “woe is me” attitude because of their bleeding disorder, feeling hopeless or overly cautious. Others may overcompensate for the restrictions imposed by living with a bleeding disorder and may take unnecessary risks.
We offer an innovative mentorship and support network with teens and young adults working together to build the teamwork and life skills they need to succeed, and a special publication, B Inspired, written by and for teens.
B Inspired
Adults
Adults are given all sorts of responsibilities, whether we want them or not! Moving out on your own, starting a career, traveling overseas, paying bills, dating, settling down, buying a home … the major life decisions and situations of adulthood bring new responsibilities and uncertainties. As an adult you’ll be managing your hemophilia B treatment regimen and all your medical needs on your own—and the needs of others, if starting a family. As you mature bodily, emotionally, financially you’ll benefit from having a network of support and information that can help make coping with life adjustments easier.
Retreats open to adults 18+
Women bleeders
Women with a defective factor IX gene are carriers of hemophilia B. There may be five times as many carriers as there are men with hemophilia, and at least one-third of carriers have factor levels below the normal range. A significant number of them have bleeding problems. Lack of recognition of an obvious condition can make it difficult for women with hemophilia to be taken seriously about their disease.
There is still a general lack of information on bleeding tendencies and treatment options for women.
There are significant unmet needs among the women of the hemophilia community; the Foundation for Women and Girls with Blood Disorders (FWGBD) has a lot of useful information on its website.
Women with bleeding disorders had a significantly higher risk of bleeding during the primary postpartum period (within 24 hours after delivery), despite being managed according to current guidelines.
World Federation of Hemophilia (WFH) - FAQ Fact Sheet
Watch this helpful video.
Additional resource HerHemophilia
Seniors
Medical science is learning more about an increasingly common type of patient: hemophilia patients needing treatment for the diseases of old age.
Hemophilia patients are known to be at higher risk for hypertension. A study showed that at age 50, hemophilia B patients had a probability of having high blood pressure of about 90% compared to about 40% in hemophilia A patients.
Two additional cardiovascular issues being seen more frequently as hemophilia patients age are atrial fibrillation and acute coronary syndrome/angina.
Currently, there are no standard guidelines for treating many of the diseases of old age in patients with hemophilia. Physicians are generally proceeding carefully and are having success with many older patients. As they gain experience, treatment regimens should become better defined and more commonplace.