Changing perceptions: Promoting Inclusion not exclusion for young people with haemophilia
We need to eliminate negative perceptions about haemophilia in order to create a hopeful future for the care and treatment of young people with the condition.
Growing up can be a challenging time particularly for young people who have haemophilia. Unfortunately for young people with bleeding disorders in the UK there are additional challenges faced around social attitudes and a lack of public knowledge and inconsistent approaches to treatment and care.
Haemophilia is a condition that affects the bloodʼs ability to clot due to the lack of an essential protein, or clotting factor needed to prevent excessive bleeding. In the absence of treatment, those living with the condition would experience bruising spontaneous internal and joint bleeding leading to disability. Anxiety about and avoidance of physical activity is a common perception. Treatments include medicines that can prevent excessive bleeding and joint and muscle damage and injection therapy with regular injections of clotting factor medicine. When combined with physiotherapy and regular exercise, these treatments can be very effective in managing the condition.
According to The Haemophilia 180 report recently launched in Parliament by The Haemophilia Society and Little Bleeders, a charity aimed at supporting young people with bleeding disorders to stay active and participate in sport, a 180-degree shift in focus on haemophilia is needed to eliminate negative perceptions of the past in order to create a hopeful future for the care and treatment of young people with the condition.
“Little Bleeders and those involved in the 180 Report are now showing us whatʼs possible [for people with haemophilia]. We need to focus on inclusion, not exclusion,” said Dr Dan Hart, consultant haematologist at the Royal London Hospital Haemophilia Centre and Little Bleeders Lead Clinician.
Many young people are drawn to sports to help keep fi t, make friends, learn new skills and have fun but young people with haemophilia are often discouraged from this due to the risks involved. Little Bleeders along with Chairman Alex Dowsett, a professional cyclist who lives with haemophilia, wants to shift the narrative from a negative one to a positive one that encourages young people with bleeding disorders to move more and be more.
“The range of treatments has improved massively and healthcare professionals work tirelessly to provide exceptional care to people with bleeding disorders here in the UK,” said Alex. “We need to get the message across that a diagnosis of haemophilia doesnʼt need mean a life wrapped in cotton wool and there are a number of sports and activities that these young people can get involved in.”
Sports like cycling, swimming, and gymnastics are just a few sports that are great options for young people with bleeding disorders. The Mahoney brothers, Kieran, 15, Matthew, 13, and Aiden, 10 all live with haemophilia. They each lead very active lives playing sports such as squash, football, hockey and swimming and are shining examples of how with the right support and treatment young people with haemophilia can still pursue their sporting aspirations. The brothers have even followed their dreams of becoming professional lifesavers and are all members of the North Sea Volunteer Lifeguards.
“Staying active can and should be a part of the treatment plan for young people with bleeding disorders,” said Dr Hart. “We should encourage more proactive discussion about the benefi ts of physical activity between families and their hospital teams to fi nd ways to avoid just being sat on the sideline.”
192 - Mattew Mahoney
Advertorial.indd 1
09/07/2019 19:21
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