Managing bleeding disorders like hemophilia or von Willebrand often brings unique challenges. Patients and parents often have questions about everything from dental care to sports to financial assistance.
Thankfully, there are more resources than ever for children, adults, families, and caretakers in the bleeding disorder community. Here’s a guide to navigate some of the most frequently asked questions.
Where can I find healthcare options that specialize in bleeding disorders?
Hemophilia Treatment Centers (HTCs) are located in hospitals and health systems across the nation.
These specialized centers combine a team of physicians, nurses, physical therapists, social workers, and other professionals to deliver a seamless, coordinated experience to people with bleeding disorders, including hemophilia, von Willebrand, and other rare or complex blood-clotting disorders.
Check out this HTC directory for a location near you »
Additionally, specialty pharmacies like ARJ provide the medication (clotting factor concentrates) and supplies to administer the factor treatment products intravenously (infusions).
Your specialty pharmacy also offers in-home nursing services, hands-on infusion education, and lifestyle assistance for a comprehensive care experience.
Your HTC and specialty pharmacy work together to address any issues related to your care, monitor progress, eliminate side effects, and ensure you’re reaching your treatment goals.
Do I need to do anything special to prepare for dental appointments?
You can see your family dentist for routine cleanings and procedures—but be sure to inform your Hemophilia Treatment Center.
HTCs often coordinate with family dentists, pediatricians, and counselors to ensure all medical professionals are aware of your bleeding disorder.
What happens if I need to have surgery for some reason?
Surgeries typically involve your HTC and the surgeon to ensure a successful outcome. It’s important to inform your care team of your bleeding disorder in advance of any procedure.
As with any healthcare provider, you want to supply them with information so they can take precautions or make accommodations if necessary.
Can people with hemophilia play sports? How are injuries prevented?
Of course! In fact, exercising and staying active strengthens the muscles around joints, making them more resistant to bleeds. Ask your doctor about preventive and prophylactic infusions for high-risk activities.
Are there any organizations that offer resources and education on bleeding disorders?
Absolutely! National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) are national nonprofit organizations that advocate for the bleeding disorder community, provide education, and offer resources.
These organizations can also help you find your local hemophilia chapter. Getting involved in a chapter can foster a sense of fellowship among people affected by bleeding disorders. You’ll have an opportunity to find and offer support, build friendships, share experiences, and learn from others through programs and activities that benefit the community.
Our medical bills have been holding us back on rent and utilities. Are there any resources for our family?
Yes! Both National Hemophilia Foundation and Hemophilia Federation of America have emergency assistance programs available to qualifying families.
NHF Patient Assistance Program
Our oldest child graduates high school this year. Are there any hemophilia-related scholarships available?
There are! We put together a list of 2022-23 Scholarship Opportunities for people with bleeding disorders.
Reach out to Patient Services to find out about resources and support available to you and your loved ones!