Visit us for conversation in the group called MyGirlsBlood on Facebook.  From time to time I'll request permission from our participants to post comments to share with you on the web site.  Here are a few interesting ladies and their comments...

Tania from New Zealand...(August, 2009)

I am from New Zealand, I am a carrier of Haemophilia, my daughter aged 10 was diagnosed Haemophilia A mild, factor VIII definciency.. she had a severe bleed aged 8 in her wrist which went undetected for 6 months which corroded her bone! However with 3 to 4 months of cogenate 2000 daily the bone reconstructed itself..so yipee for factor!! She now has begun her menstrual cycle and is suffering with heavy heavy bleeds...so not nice for a 10 year old...for the week she has her periods she receives factor..her veins are so hard to find that we had a portacath inserted..which hasnt been easy to access due to swelling after the operation....2 weeks ago the nurse at CHOC in christchurch hosp accessed it wonderfully only to find the catheter had disconnected from the port...so this Thurs my daughter is having it removed and i am fighting the system to have another put in...as she has a terrible phobia with needles and her veins are hard to find....the hosp seem to think she would be better off with a lure in her arm for a week while receiving factor...i am just so upset with the hosp and have felt not listened too as i am my daughters VOICE and i need to be strong to support her thru this....its certainly been a rollercoaster ride for us as in NZ there is only 3 girls with Haemophilia and my daughter is the 3rd and the youngest...its one thing being Haemophiliac but being a girl too makes it more isolated...i would so welcome your thoughts and how you have journeyed this ride so far....i am really wanting to make life as peaceful as possible for my daughter....

I am a mom with 2 boys whose youngest has severe factor 8. I found out that I am symptomatic as well. (34%) My mother just found out she is as well (32%) we suspect my grandmother is too. This came as quite a suprise! It's been hidden for several generations and until now we didn't know. My mother had a heart attack 3 years ago and ended up having multiple transfusions. If we had known about the hemophilia she could have been given factor instead. Knowing about our hemophilia sure does answer a lot of questions!

My name is Andrea. I found out when I was younger that I had Factor 10 Deficiency. My doctors were confused because only my father has the deficiency. My half sister Jaymee also has the deficiency. Neither of our mothers have problems with their blood. Mine isn't severe but it has been enough to keep me from doing a lot of things I did before I found out about it. My hematologist never suggested treating. I played soccer for many years but quit when I was diagnosed. I just wanted to talk to people that have similar problems with their blood. I hate having to go to the hospital and having everybody take a shot at getting an IV in me. I don't like having my mom be afraid for me to do fun things because I don't have a way to treat. Anyway, that's me :)