While it is human nature to want to avoid seemingly difficult or uncomfortable conversations, being open with others about your bleeding disorder may help them better understand what you are going through and support you in the long term. This article and visual tip sheet offer insights from Dana Kuhn, Ph.D., founder and president of Patient Services, Inc. and a clinical counselor and person living with hemophilia, on informing others about bleeding disorders.
The HERO study has profiled the physical and social impact of hemophilia, bringing to light the many struggles people living with the condition may experience on a daily basis. While transitions—particularly the transition to young adulthood—are never easy, adapting to a changing environment while managing a rare bleeding disorder carries its own unique set of psychosocial challenges. This new infographic focuses on the challenges 18-30-year-olds with hemophilia face, including suffering from pain and mental health concerns, employment and relationship issues, and difficulty accessing care.
This visual tip sheet offers advice about exercising and playing sports for people with bleeding disorders. The HERO survey reinforced the need to raise awareness about the benefits of a comprehensive care team for people with bleeding disorders, and one aspect of comprehensive care is to provide physical therapy support and education to people with bleeding disorders. Physical activity and exercise are beneficial for individuals with bleeding disorders, as exercise is a great way to preserve joint function.
This ready-to-print article features an interview Novo Nordisk conducted with Dr. James Hammel, a psychiatrist with von Willebrand disease and an NHF Board Member. Dr. Hammel provides insight into the psychosocial challenges associated with living with a bleeding disorder, many of which were recently outlined in the HERO study, and the need for increased education and advocacy within and outside of the bleeding disorders community.
This ready-to-print article and visual tip sheet offer advice for maintaining good dental hygiene for people living with bleeding disorders. The HERO survey identified the need to raise awareness about the benefits of a comprehensive care team for people with bleeding disorders, and one aspect of comprehensive care is to support good dental hygiene. Dental hygiene is even more important for people with bleeding disorder because bleeding after dental treatment may cause severe complications if not managed correctly.
This ready-to-print article and visual tip sheet offer information about challenges a person with hemophilia may face at school. As the HERO study has reinforced, it is important to educate teachers, administrators, coaches, and peers about hemophilia and the daily impact the disease can have.
This ready-to-print article and visual tip sheet offer advice for managing hemophilia while traveling or seeing relatives, such as around the holidays. The HERO survey found that while the majority of adult patients and caregivers of children with hemophilia were satisfied with support from their family, a few reported being dissatisfied.