Meeting the Challenges of a Family Bleeding Disorder
"My name is Beth, and I have Type 3 von Willebrand disease. Both of my parents have Type 1 disease that had gone undiagnosed. My mom does not have any symptoms, but my dad does."
"I'm the mother of two daughters, ages 9 and 12, both of whom have Type 1 VWD. Like my mom, my 12-year-old daughter has no VWD symptoms. However, my 9-year-old is like my father, with classic symptoms — prolonged bleeding from cuts, nosebleeds, and bruising. She's also had some joint involvement," explains Beth.
"Fortunately, my older daughter has not required any treatment so far, but soon we will be facing the hurdle of menstruation. My younger daughter needed factor replacement therapy prior to a surgical procedure. Since, I respond well to Humate-P® (Antihemophilic Factor/von Willebrand Factor Complex (Human), I insisted that my daughter also use it," she adds.
Because she is not only a woman with a bleeding disorder but the single parent of children similarly affected, Beth says her daughters "have had to deal with a mom with a severe bleeding disorder. Even at their ages, they have seen the ups and downs that go along with a chronic condition, but I feel they are more responsible and compassionate because of this experience."
She also notes that communication has contributed to a healthy mother/daughter relationship. "We have a very honest and open relationship," she says. "We discuss how to deal with all the challenges facing them, from getting their periods to not making the cheerleading squad!"
Beth is also thinking about the girls' futures. "I believe I began preparing them for the future the day they were born, and the planning continues each day. I think it's important for them to keep their minds, souls, and spirit healthy with love, compassion, and a positive attitude."
Beth has also been teaching her daughters the importance of keeping their bodies healthy, with a good diet and exercise. And she is very matter-of-fact about the future, pointing out that the girls will be facing a potential problem — childbearing. "With so many undiagnosed Type 1's in the population, genetic counseling and testing should be recommended," she says.
The bleeding disorder community has become like an extended family for Beth and her daughters. "I feel my children have benefited most by being active in the community. They both attend camp for those with hemophilia and other bleeding disorders every year, and they love it! They have built friendships, become better educated about their disorder, and have become better informed future consumers in the healthcare system."
Learn more about Humate-P®.
Please see the full prescribing information for Humate-P®.
About Beth
Beth has type 3 von Willebrand disease (VWD). Both of her parents have type 1 VWD, which had gone undiagnosed. She also has two daughters who both have type 1 VWD.
Important Safety Information About Humate-P®
Humate-P® is contraindicated in individuals with a history of anaphylactic or severe systemic response to antihemophilic factor or von Willebrand factor preparations.
Monitor for intravascular hemolysis and decreasing hematocrit values in patients with A, B, and AB blood groups who are receiving large or frequent doses. Also monitor VWF:RCo and FVIII levels in VWD patients, especially those undergoing surgery.
Thromboembolic events have been reported in VWD patients receiving coagulation factor replacement. Caution should be exercised and antithrombotic measures considered, particularly in patients with known risk factors for thrombosis.
Humate-P® is derived from human plasma. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.
In patients receiving Humate-P® in clinical studies for treatment of VWD, the most commonly reported adverse reactions observed by >5% of subjects are allergic-anaphylactic reactions, including urticaria, chest tightness, rash, pruritus, and edema. For patients undergoing surgery, the most common adverse reactions are postoperative wound and injection-site bleeding, and epistaxis.
The most commonly reported adverse reactions in patients receiving Humate-P® are allergic-anaphylactic reactions, including urticaria (hives), chest tightness, rash, pruritus (itching), and edema (swelling). For patients undergoing surgery, the most common adverse reactions are postoperative wound or injection-site bleeding, or nosebleed.
Please see full prescribing information for Humate-P®.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
Last Updated:
3/18/2010 1:49 PM