Joshua's challenge is riding a bike
Hi, I’m Joshua and I have Haemophilia A.
I have received a lot of support from both my friends and family, so being able to show them that I can now confidently ride my bike is a huge achievement. Sharing my victory with them is a great feeling and helps to prove that it is possible for me to live a life without compromise.
I have found using different phone apps and attending specialist camps really useful, as it has put me in contact with a network of other young people, who understand first-hand what it is like to have haemophilia. The resources provided by the Liberate Life initiative have also been a huge help. Finding information about haemophilia can be difficult, so it is great to have somewhere online to read and download materials from.
Haemophilia is a part of my life, but I don’t let it dictate my every decision. I want people to look beyond my condition and although challenging, I try to be as confident and outgoing as possible, pushing myself to achieve the goals I set.
Hi, my name is Kay and my 13-year old son, Joshua has Haemophilia.
Despite the challenges we have faced transitioning into adolescence with Haemophilia, as Joshua becomes more independent, he has been able to take greater control over the management of his condition and become more involved in the decision-making process.
For me, it is important to show Joshua that his Haemophilia should not dictate his every decision. I want him to have the same opportunities as his peers, from participating in tailored P.E lessons at school, to riding his bicycle without fear of a bleed.
As a rare disease, awareness and knowledge of Haemophilia is generally quite limited. To improve understanding further, I believe it is important to increase the conversation surrounding the condition, as well as providing resources for both individuals with Haemophilia and their carers.
It is possible to live a life beyond haemophilia
Click here to read more about how it is to live with haemophilia at different stages in life.
Date of preparation: February 2021