Haemophilia is a rare and life-long bleeding disorder in which the blood does not clot normally. While people with haemophilia can lead fairly normal lives with certain precautions to prevent and control bleeds, managing the condition can be challenging. Those living with haemophilia or caring for someone with haemophilia can face a wide range of difficulties—including medical, psychological, social and financial – which is why a strong network of support is a vital part of comprehensive care.
Each year on April 17, the World Federation of Haemophilia (WFH) and the global haemophilia community celebrate World Haemophilia Day to raise awareness and increase support for people with haemophilia and other inherited bleeding disorders. Members of the community are encouraged to get involved, speak out and share their experiences.
For instance, at a Town Hall meeting hosted by Pfizer on World Haemophilia Day in 2015, Patrick James Lynch, an actor, writer, producer, and advocate living with severe haemophilia A, spoke about what providing support means to him. “It means focusing on ways to reduce any negative psychosocial effects of the disease,” said Patrick. “One of the ways I support the haemophilia community is through a program called Breaking Barriers. This program provides our teens with an opportunity to take control over their care, and their lives. With location-specific workshops on wellness, creative expression, and healthy eating, we aim to teach teens how to identify challenges and develop strategies to overcome them.”
Caregiver Justin Neustadt spoke of his commitment to improving care and driving positive change in the haemophilia space. “My wife and I have three boys with haemophilia. As caregivers, we participate in local advocacy activities to meet and talk about issues,” Justin stated. “Connecting with others in the community has been very helpful in learning about challenges and successes. We have applied those learnings in our own parenting to provide optimal support to our children.”
In celebration of World Haemophilia Day, consider joining the haemophilia community. Here are some tips on how you can support and advocate for people with haemophilia all year long:
- Educate yourself about haemophilia.
- Learn how you can get involved.
- Take advantage of available programs. Make sure you are aware of the resources and support programs available to you or a loved one, including grants for people with haemophilia available from the Haemophilia Foundation Australia.
Dr. Bart Tortella is a Medical Director on the Haemophilia team at Pfizer.