Living with haemophilia: ‘A’ and her son from London, UK

Name: A.

Age: Her son is 9 years old.

City and country: London, UK.

What type of haemophilia does your son suffer from? Type A.

What is the severity of his condition: severe, moderate or mild? Severe.

Is there anyone else in your family who suffers from haemophilia?

I didn’t know I was a carrier, and there are no other family members with the condition.

When was he diagnosed?

He was diagnosed when he was 8 months.

What treatment is he on now?

He’s been on a trial for 6 months, and he’s had no bleeds at all. His factor level has moved from 1% to 7-8% which is a move from severe to mild, and so far the trial has been really good – the medication is a factor VIII substitute so is being trialled with patients with inhibitors. It’s a global trial, but there are only 7 children in the UK on it. It’s helped his confidence so much so far.

Are you part of any support groups? If yes, what are your main activities and how does that help you?

We’re members of the Haemophilia Society and also have a smaller group of inhibitor patients as the condition is so much more complicated with an inhibitor – we meet and discuss our problems and difficulties which is really helpful.

Is there anything you think is important to share with people who don’t know much about haemophilia?

One thing that I think is really important as far as haemophilia is concerned is that sometimes people go to two extremes – you wouldn’t know my son is unwell by looking at him, so people either treat him like nothing’s wrong or they’re scared of blood and worry that he’s not going to stop bleeding. The dangerous bleeds are the ones that happen inside, not the cuts.

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