Haemophilia is a hereditary
bleeding condition. You're born with it.
It affects about one in 10,000
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
have much of a problem with bruises
or if they 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 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
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
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.
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
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
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
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
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
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
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
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
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
can-do and "Go out there and do it."
We hardly say to anybody,
"No, you can't."
Somebody wanted to do bungee
We didn't think that was a good idea.
But we're great ones for saying,
and if you want to do something,
go and do it."
with the treatment being so good,
there's no reason why people
have a really positive outlook on life.