Haemophilia......DDs are carriers, anyone have any experience?

[Beenleigh]

Feel a bit stunned by the whole thing, but really aware that there's no point worrying, and they're probably not afflicted with the condition. Right then:
OH has just been diagnosed with mild haemophilia, which means that since it attaches to the X chromosome our DDs are carriers. We obviously need to find out whether they have the disorder as well as just being carriers, but the clotting agent factor 8 is very responsive to stress, i.e. if someone is stressed then the factor 8 reading may show to be within normal range, when in fact it may be very low. DDs are 6 months (teeny tiny veins!) and 21 months, and will befinitely become stressed by having a blood test.
I guess, I just need to find out as much as possible, and sit tight for a few years until there would actually be a possibility of taking a blood test without stressing them out too much.
I'd love to hear from anyone who has been through the same thing, or similar.

Forgot to say that statistically, about 70% of carriers do not have the disorder, so hopefully they will be OK.

Hi I didn't think they would be carriers if your DH has it, unless you are a carrier.

Females are technicaly don't get Haemophilia they are just carriers but I have found that I bruise easliy. My clotting factors were tested and were actually similar to my brother who is a confirmed Haemophiliac.

My uncle has it and my Mum is a carrier, my DS has been tested and his levels are fine, but DD could be a carrier.

Haemophilia usually gets milder with each generation, but there must be glitches with this or it would be so mild in everyone now.

Haemophilia society.

"Haemophilia is a lifelong inherited genetic condition, which affects females as carriers and males who inherit the condition. About a third of new diagnoses are where there is no previous family history."

I take it the ne diagnosis is where the more severe cases arise

Kids explanation

PS you never learn to spell haemophilia

Yes my dd has factor 9 defiency (haemophillia b)or the other name for it is Christmas disease.
Her father and most of the males on his mothers side have it. The majority of the femails are carriers but my dd is what they term a "bleeder"

I felt a bit huffed that they wouldn't "let" me have haemophilia, they were determined at the clinic that only males could have it.

I bruise, get loads of nose bleeds, simliar clotting level as my brother and even got mild versions of the joint pains he got, but no! I am only a carrier they say. Maybe they are allowed to say femlaes have it now. Haemophilia B too.

Thanks a lot!
Skribble, I've just been on the phone to the haemophilia society, and they said that whilst in the past, it was though that women couldn;t be haemophiliacs, that this is not true, and there is a move towards women being 'allowed' to call themselves a haemophiliac. So you can be one after all!!
Do you wear a bracelet or anything?

No I don't wear a braclet, I have no need to really, if I am getting a tooth out or anything like that I tell the dentist, just means they put more of the clotting stuff on the pads, but I got a couple of molars out last year and they were fine.

The most worry I had was when I was expecting my first baby, we decide to find out the sex as I might be a carrier, I was having a boy so I wanted to find out if I was a carrier and all about haemophilia. I had a misunderstanding with the consultant as he asked about testing but I thought he meant for things like downs syndrome so I said no.

Anyway I was getting closer to my due date and getting a bit frantic about it all, so I got an appointment with a speacialist clinic where they took blood but they mainly talked about the condition and about the genetic side of it all, I was reasured that as my brothers condition was so mild my son was unlikely to hav it any more severe.

When I had my son I still didn't know if I was a carrier. I thought I was going into the midwifery suite for a float in the pool but I didn't realise they read my notes and were all on red alert. I tried explaining that I didn't have a problem but my son might but they were all on tender hooks. Anyway it all tok ages and then I went to theatre for a section, there was loads of people so I cracked up, they explained that they might do a forceps, this is when I lost it FFS you can't squash and squeeze a baby's head if he might have heamophilia argh!

They tested him at a few weeks old and he doesn't have it, I still could be a carrier but they said it was really hard to say for definate .

Did the Heamophilia Society say that your DD's were likely to be affected or do they still think it follows the maternal side??

The haemophilia society said that dds are definitely carriers, and we will get them tested in due course to see if they have a low lever of factor 8, although apparently this is unlikely (70% of carriers don;t actually have any probs).

Very stressful re giving birth! Must have been a nightmare. Thank goodness DS is OK.
How did they get him out in the end? Did you have a C section?

They are right to say that your dds must be carriers if your OH has the condition and it's X linked, they are obligate carriers. Things that are on the X chromosome can affect females mildly but they are likely to be fine, aren't they. Good luck with it

re stress- free blood tests. Ds has had lots recently and some were totally stress free. If they use "magic cream" keep an eye on the time yourself, if they say 45 mins don't let them take blood after about an hour as the cream wears off then. I sit ds on my lap facing me with his arm tucked under my armpit (like a big hug). Dh blows bubbles and sings songs and the doctor takes the blood. ds has no idea anything is going on. One hospital we went to had a play leader who was fab at distracting ds, ask if your hospital has one of these. No experience of haemophilia but hope this helps.