Debbie Margolin was an infant, born in South Africa, when a mosquito bite on her lip would not stop bleeding. At the insistence of her uncle, a pediatrician, Debbie was tested for a bleeding disorder. At 6 months of age, she was diagnosed with Type 3 von Willebrand Disease. For Debbie, growing up with VWD in the '60s and '70s meant dealing with constant nose bleeds, heavy menstrual bleeding and joint bleeding – with limited treatment options and concerns about the safety of the blood supply. “At that time, people were very concerned about contamination of blood. Infusing was a scary prospect.”
Shortly after moving to the US, Debbie gave birth to her first child, a son, in what she describes as a “miracle pregnancy.” After the C–section delivery, she worked closely with her doctors to control her bleeding. Amazingly, 18 months later she gave birth to her second child, a daughter. “I was so lucky. So many women with VWD experience terrible complications with childbirth and bleeding. It can be very dangerous.”
During this time, Debbie tried two different infusion products but reported poor tolerability. “The side effects were a real bother.” At the recommendation of her physician, she switched to wilate. “Because of my previous experience, when I switched to wilate I was very nervous about side effects. But I responded really well. Now I get excellent results when I need to treat a bleed – without side effects. I'm sold on wilate.”
As a long–time wilate patient, Debbie also wants patients to know about Factor My Way Co–Pay and Reimbursement Assistance. “Care for a bleeding disorder can be very expensive. I know. I have a $10,000 deductible with my insurance coverage. Knowing that Factor My Way offers savings of up to $12,000 per year on my treatment costs is really helpful.”
Today Debbie lives in Queens, New York with her husband and family. She has made her career in film, working as a Post–Production Supervisor. She also teaches elementary school. For years, Debbie has been a powerful advocate for the VWD community and often speaks about her experiences as someone living well with Type 3 VWD. She believes that people with VWD have an opportunity and a responsibility to educate and inspire others. “When life gives you such an opportunity to make a difference, don't miss it. Just do it.”
This material represents individual patient and/or caregiver experience living with a bleeding disorder.
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult with your local Hemophilia Treatment Center physician or other health care provider if you have any questions related to management of bleeding disorders.