COTT would like to hear your perspective on your hemophilia care. We are interested in how the comprehensive care model is functioning in hemophilia. We are looking to gain an updated picture of hemophilia, hemophilia/HIV and hemphilia HCV care at the nation's HTC's. We are also seeking information and opinions from the international hemophilia community, including those with HIV/AIDS, HCV and/or co-infection with both. Again remaining anonymous is always an option as we are not looking to collect information that requires we now who you are. If you want to sign your name that is also acceptable. The choice is the users.

Have you ever heard of Factor V Lieden? It is reverse Hemophilia, I know as I have severe Factor V defiency with a double whammy of protien C & S deficiency. I also have the genetic form of it. I should have been having trouble since birth but it didn't rear it's ugly head until I was 49 years old. So I do have those years to be thankfull for. What is Factor V Lieden? Your blood "hyper-coagulates'' meaning my body makes clots just for the "fun" of it. Now I have to take blood thinners fo the rest of my life. With the severity I have it must be kept at a dangerously high level.Blood work every week. I wonder now if my son had gotten this from me along with being a severe <1% Factor IX Hemophiliac and would this have made things better or worse. I find this so Ironic that my son was a Hemophiliac and all the time I had this time bomb ticking inside me. PTSD may have been a factor in this disorder raising it's ugly head. I don't know if it did, I just wonder. Like Hemophilia, there is no cure. Just Irony.

Almost all of the Hemophilia community is affected by Post Traumatic Stress. I know I am. I am a survivor having lost our only child to what I as well as many others see as what was preventable. How do you deal with it? Talking with others, letting your pent up emotions out for starters. I cry everyday over Chris, there is no shame in it. It's effects (PTSD) have not been properly addressed and it's time that this disorder comes out into the open for this community. It's both physically and emotionally draining. It sucks the very soul out of anyone and can lead to serious depression issues. Denial is also a major factor in PTSD, how can one not be angry about loss or infection? This community is unique, we can talk candidly with each other about loss or infection with no judgements passed. Get active in the grassroots movements like COTT. I know it helped me in many ways to know in my heart that I was keeping the promise I made to Chris on his death bed. It also gives you the sense of accomplishment, not a false one either as the results are quite evident ie; Ricky Ray Act, BPAC seats, the FDA actually listening to us and implementing some of precautions that are not only needed but should be "standard". Get Involved and do it now, not just a donation but get into a working group. As of this time COTT does not have a PTSD working group. It's time we start one but we need your feedback on how it affects you so that we can gain insight on how to help reduce the stress. This is just a start folks, keep the thread alive and please do comment. Our total health is the big picture, without your feedback COTT will only be able to take marginal steps, we don't do things that way.

COTT is undertaking to again map our community, to understand who is still surviving with HIV disease/full blown AIDS and what is your approach to treatment. We are not necessarily seeking names and identity as much collecting anecdotal data that maps the community and its need. We also would like your zip code as it will allow us to gain a geographical cross section of the surviving HIV/AIDS infected hemophilia community.