i was told i had hep c two months ago, i was sick. felt like the flu.

A truly insightful website, Incredibly thought-provoking and interesting.Thanks

I feel really bad for the people that get aids or hiv because i understand the way certain people can feel about other people and that if you really love someone you should show it some how and having sex is one way. Its not their fault if they get AIDS or HIV. And yes you should always be safe and you should always get tested but sometimes its not always the first thing on your mind when your " In the Mood".

What makes me so sad is that my husband died not of haemophilia, nor HIV, but from the MEDICATION.It made him feel better, but it was quietly killing him without our knowledge.

I am living in South Africa, facing the same problems as Carol G and other wives. I would like to speak to any of them if they would.

I'm sad

My Grandson had HIV, his name was Stuart Blake, he passed away in the local Hospice on 29th May 2006. his mother diane Blake has put some facts on here, I would like to read them.

it makes me want to cry.

All these individuals have offered an insight into their equally unique and heart wrenching experiences of living with haemophilia and HIV. It is sad to realise just how many individuals were infected through no fault of their own and how this has impacted on their lives socially, psychologically and emotionally. Thank you for sharing this!

this is sad

good site, it was nice to be able to hear their stories as well as read them, made it more personal.

Some very emotive, honest accounts. Incredibly interesting to read them, and indeed, hear them from the people themselves.

Really interesting site, giving amazing insight into real life experiences. The audio facility makes this very personal, and moving.

Excellent site, great to actually hear people's expressions through their voices, it makes it much easier to try and comprehend what they went through by reliving their life stories.

When listening to these peoples stories, it was hard not to feel overwhelmed with sadness. I feel this site is a real eye opener, a reality check, it makes a person realise the true extent of what a person goes through when facing something like HIV. Great site, very informative

I think this website is very informative and helpful, i found it very interesting.

A very good insight into the devastating effect that these diseases have on people's lives, helps to keep it real and not get bogged down on the facts. thanks.

i wk on a hiv placement for two months but didnt really come across haemopiliacs, this web site has really opened my eyes. The individuals who controbuted are very brave and amazing people who have dealt with their illness with help and support from each other. I only hope the NHS and health professionals can help in the future.

Its sad to hear the stories. It is frightening to think a drug that is suppose to save you ends up killing you. It is shameful collecting blood off drug users you would of thought they knew the risks.

I can't believe what Ben had to go through at such a young age. Any adult would have difficulty coming to terms with his situation, I feel humbled by his situation.

What an emotional roller coaster. From Ben, who was picked on at school from the age of 7 for wearing an SOS talisman due to his haemophilia, let alone having the time bomb of HIV ticking away that he was unaware of; to David at the age of 70, living life for today. As a teenager in the 1980's I can remember the mass hysteria that went along with hearing the words HIV/AID's. As a hetrosexual female it scared the life out of me. Hopefully with combination therapy and advances in medicine, we can hope that more people with HIV can not only life for today but plan for tomorrow.

Ive recently worked in a HIV hospice, so knew a bit about HIV and haemophillia. However I had not heard peoples stories before. I found these stories eye opening. I read Bens story, it was brave and touching. He has lived with HIV since the age of 7 and dealt with ongoing illness through much of his teen years. He is an inspiration to get through those years and now have an undetectable viral load and high CD4 count. His story has made me realise how important it is to hear stories like his. This is a great website and the people who took part are very kind to let others read about their lives.

Its been good to hear your stories, I myself have loads to tell to, Its been a long hard ride for me, and i expect for you all too, at the moment i feel tired, drained and angery, reading these stories does that to me. I hope there will be proper justice one day in our lives
.
Well done to everyones story

Our son, who had heamophilia, lost his fight for life on Feb. 14th 2001. He was infected with HIV & Hepatitus C due to contaminated blood products. He received £20,000 from the government in compensation. Now people receive this amount for stubbing a toe on a paving stone. The money is unimportant, but it was an insult to what our very brave son went through.

What a beautiful tribute. I thank you personally for remembering this segment of those affected by HIV: the hemophilia community. This community has been so heavily impacted globally but so often forgotten. With the Holiday Season upon us and World AIDS Day at hand, finding this site has lifted my spirits and touched my soul knowing that people out there STILL remember and STILL care. Sometimes here in rural Wisconsin I feel so alone and that people don't care. I sometimes feel like now that my son is gone it's kind of like "out of sight, out of mind" and am often told to move on....They don't understand that there is STILL so much to do and I believe that Brandon and God would want me to keep on keeping on, fighting the good fight for good people! In loving memory of my son, Brandon 6/02/83 to 6/03/02 and my brother, Kirk, 5/15/65-1/19/88 both lost to complications of hemophila-related AIDS from contaminated blood. I would also like to honor every mom, dad, brother,sister , friend, caregiver and each and every person who reaches out to this community and please know that you are ALL in my heart and prayers. As this is a site from the UK, I would like to say that my son visited London and the surrounding areas in the late '90s on a speaking tour prior to World AIDS Day that year. Everyone was SO good to him there and he absolutely loved your country and hoped to return one day. This mom says thanks for welcoming my child to YOUR home! It was a GOOD experience/memory for him and I was so proud that he had the courage to put himself out there to try to help others. God bless you and be with you all. My love and prayers, Angie

Good site!Thanks.

It was hard but I done it, and im glad i did. its still hard to listen to.
thanks sian for giving us this opportunity to get ourselves heard

Thanks again
I'll never forget you sian

Everyday I do thank the Lord in my prayer that my son is born in 1988, however he is an Hemophiliac severe with very much difficult compications on it...I 'm glad he isn't infected by the blood by than the times he received the factorplasma.
I'm doing my best for helping people world wide to understand about Hemophilia on my own way,helping out were every I can...and never shall stop telling about the Bloodscandle on those past days....

Greetings,and with all respect for you people who's telling their personal stories

Karin, aka Sunshine

A wonderful project to be involved in and I really hope that people can benefit from our experiences - I applaud the people who organised and set up the project and all the other people who were interviewed.

I am a student nurse and have found this website really useful. It's a really good way for people to be able to tell their story I think that they are all so brave and should be very proud.

I THINK THAT IS REALLY GREAT THAT YOU HAVE NOW MANAGED TO MOVE ON AND HAVE A FAMILY YOURSELF, I HOPE THAT IN TIME YOUR ANGER WILL DIMINISH, WITH THE JOY OF YOUR FAMILY YOU CAN NOW FOCUS YOUR LIFE ON YOURSELF AND YOUR CHILDREN

I THINK THIS IS A VERY DIFFICULT SITUATION, WHERE SOMEONE IS DIAGNOSED WITH HIV AT SUCH A YOUNG AGE IT CAN BE A SHOCK, BECAUSE HE IS ALSO GAY THIS SOMETIMES HAS AN EFFECT ON HOW SOCIETY WOULD PERCIEVE HIS MIS FORTUNE, I HOPE THAT HE IS TREATED WITH THE SAME RIGHTS AS OTHERS IN SOCIETY

what a great web site, i have learned a lot from this. thank you x

Great site. Lovely to have audio facility, as this seems a far more appropriate way of communicating this subject matter.

It is a wonderfull website and I think people will benefit immensely from this, good job.

cool site

I have been doing a little bit of research into HIV/AIDS and this web site opened up another dimension for me because we tend to forget about haemophiliacs who have contracted this devastating virus through no fault of their own. I feel they were treated quite badly by all they seem to have come into contact with and the compensation seems pathetic. It is bad enough to know you have VW Disease or Haemophilia but to acquiire HIV on top must have been devastating. Their stories are courageous and thank goodness there is anti-retroviral treatment to give them more quality to their lives. This web site allow you an insight into these people's personal lives and feelings.

I read Japanese newspaper article about this website. This is a good opportunity for Japanese students to know about the true facts about people living with haemophilia and HIV in this countory. I hope many of my students read this website and understand HIV more and more.

Hearing each of the personal accounts made them all the more real to me. Their experiences are really important to share and they were all so open and honest. I found this site really interesting and very informative.

I found the material quite difficult to access.I read about Michael, Andrew and Catherine. I did know about haemophiliacs and HIV before to some extent but sobering to read personal accounts of the experience and to discover more detail. Also sobering to discover how complex an already complex condition became and how it impacted on other aspects of life physically, mentally, socially and how big an unknown those people then had to deal with.

Found the website very informative.I listened to some of the stories and found them interesting

I listened to Mick's story, devastating to find out through a diet sheet, an eye opener. excellent website to hear a story told as opposed to reading it.

Great website, very interesting and eye opening. Good to hear people own stories

I listened to all eight experiences on the website, I found each interview very touching as they gave in places extremely personal accounts. I learnt a lot from this website about the true initial cause of HIV in this country and felt very upset about the way the Government treated these people after they contracted the vius through no fault of their own. I feel that this website is very important to spread a very important message about the true facts about HIV, Hep C and Haemophilia.

I was both interested and saddened listening these very personal and emotional stories. These accounts show us, through research, development how far we have come with regards to treating HIV and how much further we need to go supporting those living with the disease. Excellent!

Very interesting web site, it is interesting to listen to peoples personal views of their illnesses.

Wow!
I found it quite hard to actually access and read the interviews, but once I did it was unbelievable. I have to admit I have never really read too much into haemophilia, but I will definately do some more research now. I can't believe haemophiliacs became infected with HIV due to contaminated blood products and were all diagnosed in the 80's, I never knew that until today
It's hard to imgaine that haemophilia makes such an impact on a persons life and depending on how school, family, friends and society in general accept each individuals diagnosis of haemophilia and HIV greatly determines the outcome of many aspects of their life.
I read stories from Micheal born in 1945 through to Dave born in 1972 and Stuart in 1975. In that space of time the experience seemed to be far different from Micheal to the other two born in the 70's. It's really sad but amazing to have a better understanding about heamophilia and now realise just what life with haemophilia is like. Thankyou to the people who took part in those interviews and gave me a great insight into such a personal experience.

Very informative and an eye opening website. A very good teaching approach. Well done.

I listened to; Joseph, owen, Ben, catherine, david and mike. I had no idea about them contracting HIV, hepc hep b. 1246 people were infected by blood products, thats alot of people who were affected. Mike didnt even know, only through a diet sheet, his GP knew a year and a half before him. It's just really sad!!! However some tell their stories who are just getting on with it. Some are angry (not suprised i would be as well), and others didn't even get much compensation.
I know more about this subject from this web site i will be passing this down the nursing chain.

really interesting website, learnt alot about the treatments etc. Reading and listening to the peoples life stories was an eye-opener . Very good website, easy to follow.

The web site is very informative. You can have a better understanding from other peoples own stories and to hear it from them rather than just reading their stories made it more interesting.

An amazing web site and I take my hat off to everyone involved in telling their stories. By using audio as a different media, also makes it more real.

Thanks, its very good to learn about the science and biology behind the conditions, treatment, and how it personally affects people all at once.

website is very imformative, easy to use, listening to these real people stories, gave me a better understanding.

website is imformative and easy to read

very intresting website. listening as opposed to reading these peoples stories made it all more real. great idea well done.

A really interesting project. All credit to the University of Brighton.

Great work......I suffer from severe Haemophilia and don't let it get in the way of leading a normal life. Up until last year I was involved in motorsport and can relate to everything said.

A job well done.

Great site, guys!

Thank you for an excellent web site - informative and straightforward to use.
I will be giving a talk to a group of school students who want to know about Haemophilia and the impact of HIV/AIDS/Hepatitis. I will be recommending that they check out the web site after my talk to learn for themselves. Thank you to everyone involved.

To Maggie Rivas-Rodriguez. The questions that you ask (contained in the comment below) regarding the Haemophilia and HIV life history project are detailed in the section 'about this life history project' which can be found at the bottom of the home page.

Hi, Sian,
it's a wonderful website -- beautifully organized with excerpts that make sense. my hat is off to the interview subjects, you and your coworkers.

a couple of questions: how were these individuals selected?
are these interviews housed anywhere, so that a person can hear the entire unedited interview?
over what period of time were these interviews conducted?
what equipment did you use?
what was the inspiration for it?
how did you make it happen, that is, raise money for it, get in-kind donations, etc?

best of luck to you,
Maggie Rivas-Rodriguez

Excellent web-site about real people who we can relate to.

Thanks

Helen Campbell

Well Done Everyone. Our stories will live on long after we're gone.

Well done and thank you to everyone involved with the project.

Thanks to everyone who contributed to the site. It's a fantastic achievement.