World Hemophilia Day: Raising Awareness
World Hemophilia Day every April 17 is when the global bleeding disorders community comes together to raise awareness about hemophilia and other similar conditions. The annual event also commemorates the birthday of Frank Schnabel, founder of the World Federation of Hemophilia. Read on to learn more.
Featured in: April - Awareness Months, Days & Observances.
Why World Hemophilia Day Matters
World Hemophilia Day primarily advocates for improved access to critical care and treatment for hemophilia patients. Also spelled Haemophilia, this rare bleeding disorder prevents a person’s blood from clotting correctly, leading to spontaneous bleeding episodes even after minor injuries.
There are two types. Hemophilia A and Hemophilia B are caused by deficiencies in clotting factors VIII and IX, respectively. The former accounts for about 80% of all hemophilia cases. Meanwhile, the latter affects the remaining 20% of individuals with hemophilia. Living with this disease involves managing bleeding episodes and coping with long-term complications such as chronic joint damage and persistent pain.
Other bleeding disorders include von Willebrand disease (VWD), which is caused by clotting proteins, and Idiopathic thrombocytopenic purpura (ITP), which is caused by a low number of platelets.
The occasion not only nurtures a global community among those affected but also advances understanding and empathy, dispelling hemophilia-related stigma. Ultimately, it is a call to action to work towards a world where hemophilia patients can access diagnosis, treatment, and quality care.
How to Support People with Hemophilia
- Educate others about hemophilia to shatter misconceptions, reduce stigma, and foster understanding.
- Participate in fundraising events that help patients who cannot afford treatment.
- Listen and understand the feelings and fears of people with hemophilia. Offer comfort and suggest stress management techniques such as meditation, yoga, or counseling.
- Offer practical support, such as rides to medical appointments and assistance with tasks that may lead to injury.
- Encourage regular health check-ups to monitor the condition and prevent complications.
Data and Statistics
Experts believe numerous famous historical figures, particularly those from European royal families, have had hemophilia. In 2019, a meta-analysis estimated over 1,125,000 men worldwide had hemophilia; 418,000 had severe cases. This significantly exceeds the estimated 400,000 people living with the illness globally.
The study also established that for every 100,000 male births, there are 24.6 hemophilia A cases of all severities and 5.0 hemophilia B cases of all severities.
Moreover, people with hemophilia have a mortality rate2 of 2.3 times as high as the general male population due to the consequences of viral inspection.
The National Hemophilia Association states that the average yearly clotting factor therapy for a person with severe hemophilia costs around $300,000. A 2021 study estimated lifetime costs for adults with severe to moderate hemophilia B1 at over $20 Million.
Brief Timeline of World Hemophilia Day
Frank Schnabel, a businessman with severe hemophilia A, established the World Federation of Hemophilia (WFH).
The WFH declared the first World Hemophilia Day on April 17, 1989, to increase awareness of hemophilia and other inherited bleeding disorders.
The WFH launched the "Treatment for All" campaign to ensure that people with bleeding disorders can access treatment.
WFH celebrated its 60th anniversary.
World Hemophilia Day Themes
| April 17, 2024 | Equitable access for all: recognizing all bleeding disorders |
| April 17, 2023 | Access for All: Prevention of Bleeds as the Global Standard of Care |
| April 17, 2022 | Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy |
| April 17, 2021 | Adapting to change: sustaining care in a new world |
| April 17, 2020 | Get+involved |
Conclusion
World Hemophilia Day highlights the need for improved care, resources, and understanding for those with hemophilia. Besides increased awareness, we must perform tangible actions to support individuals with hemophilia. We can donate to research organizations, join local events, or use social media to raise awareness about hemophilia and any other bleeding disorder.
FAQs (Frequently Asked Questions)
It is a genetic bleeding disorder where blood doesn't clot normally. Common symptoms include excessive bleeding, easy bruising, and joint pain.
It is typically inherited from a person's parents through a faulty gene.
World Hemophilia Day falls on April 17 in commemoration of the birthday of Frank Schnabel, the founder of the World Federation of Hemophilia.
| 1 | Li, N., Sawyer, E. K., Maruszczyk, K., Guzauskas, G. F., Slomka, M. T., Burke, T., Martin, A., O’Hara, J., Stevenson, M., & Recht, M. (2021). Adult lifetime cost of hemophilia B management in the US: payer and societal perspectives from a decision analytic model. Journal of Medical Economics, 24(1), 363–372. |
| 2 | Plug, I., Van Der Bom, J. G., Peters, M., Mauser‐Bunschoten, E. P., De Goede-Bolder, A., Heijnen, L., Smit, C., Willemse, J., & Rosendaal, F. R. (2006). Mortality and causes of death in patients with hemophilia, 1992–2001: a prospective cohort study. Journal of Thrombosis and Haemostasis, 4(3), 510–516. |
Mike is a degree-qualified researcher and writer passionate about increasing global awareness about climate change and encouraging people to act collectively in resolving these issues.
Fact Checked By:
Isabela Sedano, BEng.
