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Please reply. Even if you only answer your type of haemophilia it will help me so much. Thank you x

I am doing a project on Haemophilia and I am just wondering whether you will be able to answer some of my questions. You don't have to answer them all if you do not wish and in my project everyones details will be confidential. Here are the questions. Thank you in advance, and if you do answer the questions will you please be able to put down the questions number so that I can see which question you are answering. Thank you.

1.   What is your understanding of what haemophilia is?
2.   What type of haemophilia do you have? A, B, or acquired?
3.   Are any of your family members sufferers of haemophilia?
4.   When and how was your haemophilia diagnosed?
5.   What treatments have you been offered for haemophilia?
6.   How effective do you believe the treatments are?
7.   What is the worst thing that has happened to you as a result of haemophilia?
8.   How was this treated?
9.   How are you coping with the treatments for haemophilia?
10.   Have there been any improvements in the treatments over the years?
11.   What do you know about gene therapy?
12.   How effective do you think this therapy is?
13.   Do you think it will lead to a cure in the future? 

You don't have to answer them all; if you want you only have to answer one but any answers will be of use. Thank you. x

hi my son has haemophilia a and we live in the walsall area, does anyone know of a support group in our area??

hi there the midlands haemophilia group will be meeting up again soon
i have just been a bit busy latley with family issues
if you are a member of the haemophilia society you should recieve an invite
if you are not a member head over to there site http://www.haemophilia.org.uk/  and give them a call and they can sort out a membership for you for free

i live in cannock if you need a chat about anything and also have haemo a

hope this helps from gav

hi my son has haemophilia a and we live in the walsall area, does anyone know of a support group in our area??

Hi, I am doing some research into the ancilliary items haemophiliacs need when administering their inhibitors.

Specifically, I am interested in what sort/size of gauze and plasters you like to use, but I would also like to know if there is anything else you would like, that isn't currently readily available, that would make the whole process so much easier/safer.

Thanks, Tim.

yea don't lay on it funny 
After 47 years you would think I would know how I get all my bleeds, but nope. most get started by a twist or a knock but some just seem to come from nowhere. most develope overnight even after a twist or knock in the daytime

All -

Last year I started '09 with a 4 month run of NO BLEEDS!!! That was my longest span of no bleeds that I can remember. Usually its more like a bleed a week (at a minimum) so after 4 months I was feeling very NON-Hemo.... of course, that didn't last....

This morning I woke up with a L elbow bleed. It was fine when I went to bed! Didn't have any Ninja dreams or anything like that, but the Elbow is definately bleeding....

You gents ever have stuff like that happen?? I'd be interested in hearing your experiences!

Axel
factor8man

Thats how 75% of my bleeds start.  Right elbow bleeds because it doesnt bend or straighten very well so find getting it comfy in bed is a pain in the backside.  If I lay on it funny then it often bleeds. 

All -

Last year I started '09 with a 4 month run of NO BLEEDS!!! That was my longest span of no bleeds that I can remember. Usually its more like a bleed a week (at a minimum) so after 4 months I was feeling very NON-Hemo.... of course, that didn't last....

This morning I woke up with a L elbow bleed. It was fine when I went to bed! Didn't have any Ninja dreams or anything like that, but the Elbow is definately bleeding....

You gents ever have stuff like that happen?? I'd be interested in hearing your experiences!

Axel
factor8man

Good work all
 lovely to meet you all at trafalger square today.

wow my tie showed up well check the link

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