friend's baby has haemophilia, so upset. Please can anyone tell me more

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Header says it all really. My friend's 10 month old ds has just been diagnosed with severe haemophilia . She lives in Australia, so hard to speak to her directly but obviously she is shattered. Can anyone tell me more about living with haemophilia and what it's going to be like for them, I feel so ignorant and want to inform myself to help her.

Just saw your post and didn't want it to go ananswered.

So for your friend. I know nothing about it though so can't be of much help.

Thank you. Hope someone else will be along

I know only a very little about haemophilia, but from what I understand, some haemophiliacs have regular infusions of Factor VIII, and some have infusions as and when needed. Obviously things like nosebleeds and scrapes and grazes have to be dealt with differently than with a child without haemophilia. Contact sports might be a problem later on, but schools should be able to offer alternatives. There could be a support group local to your friend (or if not local, accessible on the internet).

Management of haemophilia is much better than it was decades ago. There's a guy I know of who has haemophilia and who has undergone major surgery successfully. He's probably coming up to his 70s and although he might have a milder case than your friend's son, he would have grown up when treatment wasn't as effective as it is now.

Obviously it's a horrible shock to get this kind of diagnosis anyway, but what can make the situation feel worse is that of the most common form there is a family history in 70% of cases, and in 30% it's the result of a mutation. Presumably your friend will be offered genetic testing. (I'm only pointing that out because along with the diagnosis your friend and partner might also have to deal with feelings of "guilt".)

This is a really worrying situation for parents to be in so I hope your friend and her family are getting lots of support and information from their medical team.

What a shock for your friend

Just to add to UglyMugly's post, I had a couple of good friends with haemophilia as a teenager (there was a national centre that dealt with it where I lived, so several lads at the local boarding school went there for that reason) and apart from being careful re sports, and (one regular, one occasional) infusions, they led utterly normal lives.

One was actually a bit of a heartthrob tearaway teen, IIRC...

Again, I suppose it makes a big difference how severe 'severe' is, but this was in the 70s so tx is much improved I would think.

That's really helpful thanks

He will need Factor VIII, I think. But to hear of dishy hearthrobs and 70 year olds with it is very comforting

I was wondering if it was inherited or not, she has lots of nephews and nieces so I don't know if it would have come through her genes, and he has a dd from a previous relationship but my understanding is it affects men far more than women. But whatever caused it they have to live with it, luckily they're in a place and time with excellent medical facilities. Still ...

It is much of a let down to know so many people to not know anything about haemophilia.
My name is Sam, I'm 19 from south england, unfortunately I was diagnosed with haemophilia A when i was 8 years old and take factor VIII if and when I need it.
It is VERY rare for a woman to have haemophilia but not so rare for them to be a carrier.
It's really not that hard living with it once you get used to it, I used to love playing football when I was younger but realised I had to stop playing, I was heart broken but a few years passed and I do go for a kick about with a few mates. The only thing is when doing something you know you can get hurt in the haemophilia is always in the back of your mind but you get used to the things that you can and can't do.
I hope I've given you a bit more info about this, I'm sorry your friend has to go through the same as what my mum did but she seems happy enough :).