Living with Haemophilia

Living with Hemophilia: A Young Adult Perspective

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Untreated, haemophilia can be extremely debilitating, making everyday activities that you and I do without a second thought very dangerous. Something as simple as falling over could cause a serious joint bleed and permanent damage.

Real Stories from People living with Hemophilia

When you compare the number of papers published on haemophilia over the decades, it becomes clear that our knowledge of the bleeding disorder has increased dramatically. In the s, there were fewer than papers published on haemophilia, whereas more than 2, papers have already been published in the present decade [2]. These congresses provide the perfect platform for a huge amount of knowledge to be shared.

Each week, we are inundated with news stories and articles emphasising the importance of staying active and exercising regularly. For people with haemophilia, it is not that easy. It is only in the last half century that healthcare professionals have begun to encourage people with haemophilia to stay active [6].

Although physical activity is now often encouraged in those with haemophilia, there are still limitations to the sports that can be undertaken. At 15 months old, Leland developed a complication called an inhibitor. This means that his body, his immune system, fights off the medicine — the infused factor VIII. That, quite honestly, pulled the rug out from underneath us, when the preferred methods of treatment were no longer options for us.

The alternative clotting factors that we use to control bleeding are much less effective. Another big challenge for us as a family and, for my husband in particular, is the high cost of hemophilia in general and treating an inhibitor in particular.

My husband has had to make career choices based on maintaining good health insurance. As a parent, I would love to fix things and make everything better.

Richard’s story: Living with haemophilia

The inhibitor has taken away a lot of the control that parents have in effectively managing hemophilia. How many teenagers get to do that?

Hopefully these experiences help maintain some balance, for both Leland and our family as a whole. According to Sonji, bleeding management of a patient with an inhibitor is a real challenge. Currently there are only two products to choose from to control bleeding, and only one product approved for prophylaxis preventative treatment. I worry that my child might literally lose life or limb and I only have a limited range of medical interventions to help him.

Living with Haemophilia,

On August 7th, , Sonji and her husband Nathan welcomed their son Thomas into the world. Thomas, who has severe Hemophilia A, developed an inhibitor when he was 8 months old, soon after beginning treatment for his hemophilia. He suffered his first joint bleed at age 2 and was temporarily confined to a wheelchair following a bleed into his ankle joint in October that took over two months to resolve. This chromosome is present as two copies in females but only as one copy in males. Richard recalls his experience of living with severe haemophilia for over 65 years, documenting the changes in treatments from the pre-NHS era to the present day.

Read the story on screen.

All Stories

Print out the story PDF. Print out the toolkit PDF. Richard has gone from having lead and opium lotion compresses applied to his bruises to undergoing world-leading heart surgery. In the early years, he and his parents had little say in what treatment was given, with the incident surrounding his misdiagnosed diphtheria being a notable exception. Many of the techniques Richard endured early on have been shown to be at best ineffective and at worst harmful, and research has produced new techniques that allow haemophiliacs to live near normal lives.

Thinking about your own practice, what have been the most important research innovations that have improved patient care?

What mechanisms are in place to ensure that practice adopts procedures based on the best evidence available and does not blindly follow established custom? Are you aware of the ongoing research in your field or practice area? How would you find out about a new technique that had been shown to improve patient care? To compare your answer to our model answer, click here.

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