The Haemophilia team from EKHUFT have been awarded a £250,000 grant to lead a ground-breaking research trial into haemophilia.
The study will take the first steps towards establishing links between exercise, weak muscles and joint damage caused by the condition, to see if muscle strengthening exercises are beneficial for young children living with haemophilia.
Haemophilia is a rare condition that affects the blood’s ability to clot. It’s usually inherited, and most people who have it are male.
Normally, when you cut yourself, substances in the blood known as clotting factors combine with blood cells called platelets to make the blood sticky. This makes the bleeding stop eventually.
People with haemophilia don’t have as many clotting factors as there should be in the blood. This means they bleed for longer than usual and can lead to bleeding into muscles and joints. As a result, muscles become weak, joints become painful and it can become difficult to move.
Dr David Stephensen, Physiotherapist, said: “Being able to participate in games and activities with their friends is one of the things that matters most to young children with haemophilia.”
Diane, whose 12-year-old son Robert has haemophilia, said; “When Robert first had severe knee damage at the age of three, he started physiotherapy. He couldn’t walk for months and it was very difficult for him.”
The technology being used in the trial is exactly the same as the technology used to make movies that feature computer graphics, such as box office phenomenon Black Panther.
Dr Stephenson said: “One of the interesting and novel things about this study is that we are attaching small motion sensors to the children to get detailed information about how they use their joints and muscles when they walk and move about, and in particular if the exercise programme has any effect on this.
“Our hypothesis is that if we can get them to move better, they can move more.”
The research is a collaboration between East Kent Hospitals University NHS Foundation Trust, Great Ormond Street Hospital NHS Trust, Bart’s Health, University of Kent, Kings College London and the Haemophilia Society.
The team were featured on BBC Southeast this week for their work with the research, and you can find out more about the trial here https://youtu.be/BMLcKrKC098