Peer support programs are informative and empowering – learning new things about yourself and others, and developing new life skills and independence at our family camps, men’s support groups, women’s groups and regional outreach meetings really do make a difference to the lives of people living with bleeding disorders.
Haemophilia and Von Willebrand disease are rare but their impact can be devastating. From the shock of diagnosis through to painful bleeds, onerous treatment needs with repeated intravenous injections, and a life of social isolation because you don’t know anyone else with the same health condition, it can be both frightening and overwhelming for little children and their parents.
Then there are their long-term physical challenges, not just because of the bleeds and the pain, but from the chronic arthritis and joint damage that can result from the repeated bleeding.
HFA strives to improve treatment and care through advocacy, high quality education resources and the promotion of research. But more than that, we understand the importance of practical and emotional support, and we make this happen.
The importance of our camps for children and families cannot be underestimated. At these camps, children connect with others going through the same challenges and form life-long friendships with others who understand what it’s like to live with an incurable chronic condition. Parents develop support networks and share knowledge and experiences that will stay with them long into the future.
Families can discover new activities without putting the safety of their child at risk – instead they build confidence and self-esteem. I think you’ll agree that for a child with a bleeding disorder this is invaluable.
Your donation will not only make a huge difference to a child’s early development, but also as they enter their teenage years where ongoing engagement and peer support is crucial. This is often at a time when they are really struggling, because they resent having a bleeding disorder and don’t want others to know what it’s like for them growing up with a bleeding disorder.
With your donation, we can continue to educate, support and advocate for every child diagnosed with a bleeding disorder right through from childhood, their teenage years to adulthood, and support their families as well.
THANK YOU SO MUCH FOR YOUR SUPPORT
PROGRESS HAPPENS WHEN COMPASSIONATE PEOPLE SHARE A VISION AND WORK TOGETHER TO ACHIEVE IT.
Date last reviewed: 12/11/2018