People affected by severe haemophilia can cause spontaneous internal bleeding.
Normally, when people cut themselves, substances in the blood known as clotting factors combine with blood cells called platelets to make the blood sticky which makes the bleeding stop eventually.
However, in haemophilia, there aren't as many clotting factors as there should be in the blood.
This means that someone with the condition bleeds for longer than usual.
There are about 6,000 people with haemophilia in the UK. Most of these are males because of the way the condition is inherited.
Most young people with severe haemophilia in the UK are given preventative treatment - called prophylaxis - which consists of several injections of factor replacement concentrate each week.
However experts have warned almost one in five young people with haemophilia in England and Wales are increasing the risk of major bleeds by not taking the right treatment.
According to a new study by the University of Hertfordshire - the research is this country’s first major nationwide study into treatment adherence among young people with haemophilia.
Experts found that 18 per cent of those aged from 12 - 25 with haemophilia are not sticking to treatment plans because of a lack of understanding about the severity of their condition.
While prophylaxis reduces bleeds and improves the quality of life for patients, experts argue regular injections can have a major impact on a patients’ everyday life, especially for young people.
Dr Sandra Van Os, from the University’s School of Life and Medical Sciences and lead author of the study, said: “Interestingly, the findings suggest that in addition to social support and treatment beliefs, emotional responses in relation to haemophilia, such as fear, anger or distress, may also contribute to better adherence.
“But, in a busy clinic it may not always be easy to tease out whether someone is simply concerned about their prophylactic treatment, or whether they are experiencing negative emotions that could actually contribute towards a motivation to adhere better.”
The aim of the study was to provide evidence of what makes young people adher to treatment and explore the association between non-adherence and number of bleeds and hospital visits for young people.
The research team worked with 13 haemophilia centres across England and Wales and surveyed just under 20 per cent of the total population of people aged 12 to 25 who have severe haemophilia and are on prophylaxis.
Dr Van Os added: “It is important that patients receive sufficient and appropriate social support in order to stay on track with their treatment.
“It will also be beneficial to reduce potential concerns about prophylaxis, and to assess whether patients understand their treatment sufficiently well and the role they themselves have to play in its effectiveness.”
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