Haemophilia is a hereditary bleeding condition. You're born with it.
It affects about one in 10,000 people. It by and large only affects males.
And the common type of haemophilia is called Haemophilia A.
It's a lack of a clotting factor called Factor Vlll.
But there's a second, slightly less common, type called Haemophilia B.
Most people have either a lack of Factor Vlll or Factor lX.
(woman) Ryan's got severe haemophilia.
He has virtually no clotting factor in him at all,
so obviously he has Factor Vlll
to ensure that some clotting can take place.
People with haemophilia don't usually have much of a problem with bruises
or if they cut themselves shaving or something like that.
It's not a particular issue.
Much more of a problem is bleeding into deep-seated tissues,
most particularly joints and muscles.
And the characteristic scenario is that you might bang your elbow
and you would then bleed into the elbow,
which is really very unpleasant and painful.
And because the joint is damaged, it's more likely to bleed again.
Growing up it's not really caused too many problems.
Obviously there's certain things where it's kind of,
maybe doing that wouldn't be a great idea.
But I still do a lot of stuff.
I've done a lot of stuff. I have quite a few hobbies.
Obviously certain activities are more sensible than others.
Ryan wanted to try karate,
but he survived about two sessions and then we realised that wouldn't be good.
But we still let him try, because you've got to know for yourself
and he's got to learn the kind of risks he can take and the risks he can't take,
and you know...
parents aren't there forever and you've got to learn for yourself
to be responsible for yourself.
(Dr Winter) A really critical part of care
is to have people in the care team who are experts in joints and muscles.
So if somebody with haemophilia gets a bleed,
we will give the Factor Vlll to stop the bleeding,
then the physiotherapist will work on the joint or the muscle
and get it working again.
I think the biggest problem growing up with haemophilia
is not the bleeding itself, it's the kind of having to manage it,
the actual injection, because if I wanted to go away on a school trip,
I'd have to make sure I had all the Factor I need.
It's like the extra taking responsibility.
That's the bigger problem, and I've not been the best for doing that.
For the last 15 years we've had what we call genetically engineered
or recombinant treatment, which doesn't come from any blood donors,
but is made in a laboratory in California.
So it is human Factor Vlll and lX, but it's genetically engineered.
Classically, if someone has a bleed,
we give them an injection of Factor Vlll to stop the bleeding
and that's called demand treatment.
But in children it's been shown it's a really good idea
to give the injections three times a week for Haemophilia A
because that stops spontaneous bleeding.
A lot of the bleeding in haemophilia will just come out of the blue
without any trauma.
And the regular giving of Factor Vlll three times a week stops that.
(Ryan) There's been times where I've had six weeks
where I was bleeding really badly into my thigh.
And it was so painful.
And you know, by the third week you're kind of...
you just get so bored of it. It's like, I just want to get out again!
And there's been times where I've just been...
well, I've been in floods of tears sometimes.
Not becausen, just because there's so much you want to do
and sometimes you can't.
But you've got to look at things positively, you know.
I might not be able to do skiing,
but I can still go and play basketball my mates, stuff like that.
And you can't let it get you down.
(Dr Winter) Haemophilia has an unusual inheritance
because if you're a man with haemophilia,
you can't pass it on to your own sons,
but it does mean that your daughters will become carriers.
If you are a carrier of haemophilia,
your girls, each girl has a 50-50 chance of being a carrier,
and each time you have a boy,
there's a 50-50 chance of that boy having haemophilia.
I knew I was a carrier because my father has haemophilia,
and I was tested to see if I was a carrier in my teens.
So I did know that I was, which softened the blow to start with.
And then when Ryan was born,
they took blood straight away from the umbilical cord as soon as he was born
and we found out about three days later.
Obviously I hoped he wouldn't have, but he did, so... here we are! (laughs)
Our culture and philosophy is very much can-do and "Go out there and do it."
We hardly say to anybody, "No, you can't."
Somebody wanted to do bungee jumping. We didn't think that was a good idea.
But we're great ones for saying, "You can,
and if you want to do something, go and do it."
These days, with the treatment being so good,
there's no reason why people shouldn't have a really positive outlook on life.