Forums

COTT Forums

COTT is committed to grass roots dialogue and discussion about the range of issues that confront our community. We have designed the Forum Section to be the vehicle for that ongoing dialogue and discussion. We seek to create safe and nurturing environments where those afflicted and those affected can come together and discuss openly the community issues of the day.

COTT is also 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 also seek to understand the hepatitis C landscape and how that killer is effecting our community 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.

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 and our goal is to have the widest level of participation as is possible. We urge you to join our Forums and participate, always remembering that we come to these discussions with mutual respect for all those that have been impacted by hemophilia, HIV/AIDS and HCV.

Treatment and Care

HCV Treatment

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.

Post Traumatic Stress Disorder

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.

HIV Treatment

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.