Did you know that our Haemophilia team provide care to 295 patients every year with bleeding disorders?
One of these brave patients is Christopher who has haemophilia A. Haemophilia is a blood condition that means bleeding does not stop because the blood cannot clot. This causes excessive bleeding following a cut or injury, but also leads to internal bleeding which can damage joints and muscles.
To mark World Haemophilia Day, we are highlighting Christopher’s story to give everyone insight into this rare disease.
Having a family history of haemophilia, Belinda was aware of the rare bleeding disorder and the impact it could have, but nothing prepared her for the news 15 weeks into her pregnancy that her son Christopher had hemophilia A.
Christopher, now eight years old, had his first instance of excessive bleeding into his left elbow at just 10 months old, and at one and a half the bleeding wouldn’t stop. This is when it was confirmed he had developed inhibitors. Inhibitors are a serious medical problem as it means standard treatment is no longer effective.
Ever since, Christopher continues to experience bleeding every week, meaning him and Belinda would endure the four hour drive to and from the RCH once or twice a week. The bleeding also led to the wearing down of his joints which meant often using a wheelchair, although now he can wear splints to protect his left elbow and allow him to walk.
A typical day for Belinda and Christopher involved getting up early to complete the two hour treatment process before he heads off to school and assessing what could be considered a risk to him each day, like riding a bike. Christopher even lost a tooth which resulted in a prolonged hospital stay.
However, thanks to a new medication, Christopher’s life has completely changed.
“Christopher is like a different person today and no one can stop him! He lives his life to the fullest and is so much happier and confident being able to do most of the same things his friends can do. It has made life so much easier for us as a family, we can now go on holiday without the anxiety of having to cancel, and we don’t have to bring lots of medication and equipment.”
Despite a challenging start in life and ongoing care, Christopher is doing well today and Belinda hopes he continues to improve.
“While we are still taking it day by day, we have seen remarkable improvements for Christopher in the last year and hope this continues so he can have a great quality of life and choose to do whatever he wants to do.”