Finally! we're moving forward!  http://www.medpagetoday.com/PublicHealthPolicy/StemCellResearch/13133

i'm so sorry to hear about your dad. ((hugs))
i had two uncles that were type A and were given the transfusions, they were also given HIV and have both been gone for 20 and 16 years. i am pregnant with my first and although we don't plan on getting any prenatal testing done we're hoping to have a healthy child.
growing up around my uncles all i knew was them getting their factor treatments, although i know now things are done much differently. unfortunately this board is pretty slow, i wish we had more people coming through here.

Hi!! Im really new to all this... And not even sure if anyone even still gets on here but, here goes

My dad had hemophilia A and contracted HIV and Hepatitus along with most hemophiliacs of his time and now I have a son who is severe hemophilia A... Im truely terrified and even tho I know if it hadnt been for the transfusions being how they were my dad would have been fine, I still worry.. Not to mention my dad was a moderate case so Carson being Severe is just that much more scary! Would LOVE to hear from someone who actually deals with this instead of just reading a bunch of generic websites lol!

Thanks

i had a port for about 10 to 11 years. I had it taken out during the spring semester of my sophomore year in high school. I wanted to be a little bit more independent.  Before I had it taken out, I practiced sticking myself. i know it sounds a little weird, but it just seemed inevitable anyways.  I could have had my port for a longer period though.

that's a really great question.  since i don't have kids yet i'm wondering, what are the downsides to the port? are they only for infants, or can they be used throughout life?

thank you for joining!! please spread the word if you can!!

When you you start teaching your child to stick himself?  Is there an age? Is there a growth marker ie. his last baby tooth falls out?  Any advice would be appreciated.

why - because the first time might have been a fluke.

I have a son with severe A, no inhibitor, no target joints, no breakthrough bleeds.  We treat three time a week and change his dosage with his weight.

I'm here to support and get advice.... welcome aboard!

1. Nothing is censored on this site, but I ask you to still please be respectful of others and of the topics raised in the forums.
2. No personal attacks, you will be warned, then banned if it continues. (Don't bother making a new account because i can see your IP address)
3. Follow 1 & 2 and we'll be fine.


Have fun everyone!

Welcome to the Hemophilia Family and Friends Support Group

This site is dedicated to those living with, carriers of and family and friends of those affected with Hemophilia!
All thoughts and comments are welcome, please just be respectful.
The reason this site was created simply is because I myself am a carrier of Type A Hemophilia, am married and will soon be starting a family.  There are not may online communities dedicated to Hemophilia and I am hoping that a wonderful dialogue can happen here.
Looking forward to talking with everyone!
~MissTara