Haemophilia is a hereditary

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 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

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.