Bleedings disorders are mostly a genetic, lifelong, inherited condition that can be transferred from either parent
to their child (although around 30% of cases as totally spontaneous with no previous family history).
The most well-known forms are Haemophilia A which affects 1 in 5,000 people in the UK, haemophilia B which affects 1 in 20,000 people in the UK and vonWillebrands which only affects around 1% of the UK population. There are many other bleeding disorders too.
Various forms of severity exist with each form ranging from severe where the patient is completely missing one of their 13 clotting factors to mild where they might only have a level of around 8-9. ("normal" levels are between 50-200).
Missing just one clotting factor means that when you cut, bump or hurt yourself or fall over, the patient bleeds for longer - not faster - just longer. Their blood doesn't clot until they have an injection of the missing clotting factor. Bleeds can often happen spontaneously too typically into ankle and knee joints which can cause lasting damage to the joint.
Clotting factor injections are often given every other day but for some, more or less often - even daily. Administered via an inserted port or direct into veins, parents learn very early on how to inject their children so they can treat at home. The children then learn to administer their own intravenous injections from around age 9-10 years.
Life with a bleeding disorder can be very disruptive. Regular treatment, hospital visits, bleeds, hospital stays, consultants, physios, specialist dental care. It can also be very isolating. With such a rare condition, families hardly ever come across another family via their usual day to day life.
That's why we set up this group. To support families living with bleeding disorders to ensure the parents and carers, patients and siblings have somewhere to go to talk, share, laugh and cry.
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