Living Stories: Home page

Comments

From Beverley sonia Drummond (student) on Saturday 16 April 2016
My sympathy goes out to them. These people are special, to express their feeling about illness they go through, very informative.
From Sian on Saturday 18 April 2015
I was involved in this project years ago. Today I listened to the stories again and heard their voices. I will never failed to be moved.
Many of the people who recorded their life stories for this project have since died. But their voices and their stories live on. So important.
From Professor Christine Lee on Thursday 18 December 2014
December 24 2014
I cared for over 100 people with haemophilia from 1982 until I retired in 2005.
This is the first I have heard of this project.
Doctors too experienced this tragedy.
Unfortunately there is a lot of distortion of historical fact and wrongly placed accusation.
From John Cornes on Tuesday 12 November 2013
Family of 6 Hemophiliac Brothers, all contaminated, 3 died HIV/Aids,other 3 of us Hep C,and have received transfusion from some one who has died of CJD, I have developed Cirrhosis. how do I feel??? if only you knew!
From John on Thursday 29 November 2012
I was in the Military and during the First Gulf War I received a blood transfusion in December 1990, I became ill while I was on Operations during the Kosovo Crisis in 2000, after various tests including 3 blood tests was informed that there was nothing wrong with me. In 2003 I collapsed and after 1 blood test in German hospital was diagnosed with HEPC, I was then posted back to Edinburgh and started treatment at the Royal Infirmary, after 8 months of treatment was clear of the Virus. It had damaged my liver, I tried to find out why it took so long to get diagnosed, the MOD knew I had HEPC but didn't tell me. I then took legal advice and when we tried to take them to task all my medical records mysteriously went missing!! a cover up! I did receive the money from the Skipton Fund, but it is a pittance compared to working, I was medically discharged after 26 years and now don't work due to my health, I didn't know what HEPC was and found out the hard way and the stigma attached to it, every other country that didn't screen the blood including Ireland paid substantial compensation to their victims, I find it pathetic that our Government refused to give a lump sum, then I realised it was cheaper for them to give a small monthly payment as our lives will be cut short!! They have had the Penrose inquiry which in my opinion is and was a waste of time, compensate all victims NOW and their families that are left behind after the Incompetence of our Government Medical Services!!!!!!
From steven lowe on Friday 5 October 2012
hi im hiv+25 years no problems until 18oct 2009 got ill cmv pcp and a hole lot more and i feel isolated from mates and family as they dont know what i feel or go through and i need someone to talk to.
From Robert on Tuesday 5 April 2011
Amazing to see these stories. Andto hear the people say it in their own words is very powerful.
From Donna Scovill on Saturday 20 September 2008
Thank you for letting read and share in your sadness, Just found out my daughter is HIV/HEP C positive and the outlook is very bad.God Bless everyone here.
From Russell Howes on Tuesday 10 June 2008
I have had the pleasure of caring for individuals effected by HIV and know to well the perils of this unique condition and the stigma assosiated with it. Its time more people were made aware of this disease. Dont give up.
From tammy campbell on Sunday 23 March 2008
i was told i had hep c two months ago, i was sick. felt like the flu.
From Jonathan Roberts on Thursday 3 January 2008
A truly insightful website, Incredibly thought-provoking and interesting.Thanks
From Beautifull on Friday 21 December 2007
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".
From Sue on Wednesday 12 December 2007
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.
From Sue on Wednesday 12 December 2007
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.
From Jenny Rose on Monday 3 December 2007
I'm sad
From Mrs.I.Blake on Sunday 25 November 2007
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.
From angela on Monday 29 October 2007
it makes me want to cry.
From Donna Taylor (University of Brighton) on Wednesday 17 October 2007
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!
From Sharon on Monday 11 June 2007
this is sad
From ruth on Monday 23 April 2007
good site, it was nice to be able to hear their stories as well as read them, made it more personal.
From Alice (Student Nurse) on Monday 23 April 2007
Some very emotive, honest accounts. Incredibly interesting to read them, and indeed, hear them from the people themselves.
From Nicola, Student Nurse on Monday 23 April 2007
Really interesting site, giving amazing insight into real life experiences. The audio facility makes this very personal, and moving.
From Amy (student nurse) on Monday 23 April 2007
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.
From Mandy Barker Student Nurse, Brighton Uni on Sunday 22 April 2007
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
From Emma (Student Nurse) Brighton University on Sunday 22 April 2007
I think this website is very informative and helpful, i found it very interesting.
From lizzie on Sunday 22 April 2007
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.
From hannah student nurse on Sunday 22 April 2007
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.
From Clare Maynard on Sunday 22 April 2007
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.
From Jo Gander on Saturday 21 April 2007
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.
From Claire Frampton (Student Nurse) Brighton University on Friday 20 April 2007
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.
From Helen Arnold (Student Nurse) on Monday 15 January 2007
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.
From From Faruq, Suffering from the same as everyone on this site on Friday 12 January 2007
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
From Ann & Mick C. on Thursday 11 January 2007
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.
From Angie Hendrickson/Wisconsin,USA on Monday 20 November 2006
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
From Joe on Thursday 26 October 2006
Good site!Thanks.
From Ben Rolls on Sunday 15 October 2006
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
From Karin on Thursday 13 July 2006
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
From From Martin Beard on Monday 10 July 2006 on Monday 10 July 2006
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.
From Jennifer on Tuesday 13 June 2006
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.
From DONNA LEE on Tuesday 30 May 2006
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
From DONNA LEE on Tuesday 30 May 2006
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
From lucy mcewan on Tuesday 30 May 2006
what a great web site, i have learned a lot from this. thank you x
From emma on Sunday 23 April 2006
Great site. Lovely to have audio facility, as this seems a far more appropriate way of communicating this subject matter.
From Ben, Nigeria on Thursday 20 April 2006
It is a wonderfull website and I think people will benefit immensely from this, good job.
From alex on Thursday 13 April 2006
cool site
From Maria (student nurse) on Tuesday 4 April 2006
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.
From Takenori Irikura(English teacher teaching in Japan) on Tuesday 4 April 2006
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.
From Hannah Low (student nurse) on Monday 3 April 2006
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.
From Tessa Harding on Monday 3 April 2006
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.
From Fiona on Monday 3 April 2006
Found the website very informative.I listened to some of the stories and found them interesting
From Chris (student nurse) on Monday 3 April 2006
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.
From Sarah (student nurse) on Monday 3 April 2006
Great website, very interesting and eye opening. Good to hear people own stories
From Lynsey Gould (student nurse) Brighton University on Mon 3/4/06 on Monday 3 April 2006
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.
From Vicky Lacey (Student Nurse Brighton Uni) on Monday 3 April 2006
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!
From Hayley Parker (student nurse) on Monday 3 April 2006
Very interesting web site, it is interesting to listen to peoples personal views of their illnesses.
From Jacqui Weaver on Monday 3 April 2006
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.
From Purity Ehrenreich on Monday 3 April 2006
Very informative and an eye opening website. A very good teaching approach. Well done.
From Hayley Peters Student Nurse, Brighton Uni on Sunday 2 April 2006
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.
From Lucy Seeley (student Nurse) brighton uni 1st april on Saturday 1 April 2006
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.
From Angela Brown on Saturday 1 April 2006
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.
From Jo on Friday 31 March 2006
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.
From Tanya (Student Nurse) on Friday 31 March 2006
Thanks, its very good to learn about the science and biology behind the conditions, treatment, and how it personally affects people all at once.
From kelly roberts on Wednesday 29 March 2006
website is very imformative, easy to use, listening to these real people stories, gave me a better understanding.
From veronica clarke on 29th mar 06 on Wednesday 29 March 2006
website is imformative and easy to read
From dee clark on Wednesday 29 March 2006
very intresting website. listening as opposed to reading these peoples stories made it all more real. great idea well done.
From Huw Edwards on Monday 16 January 2006
A really interesting project. All credit to the University of Brighton.
From Steve Fell on Sunday 4 December 2005
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.
From Bill on Wednesday 30 November 2005
A job well done.
From TommyD on Wednesday 30 November 2005
Great site, guys!
From Patricia on Tuesday 29 November 2005
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.
From Sian on Monday 28 November 2005
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.
From Maggie Rivas-Rodriguez on Monday 28 November 2005
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
From Helen Campbell on Friday 25 November 2005
Excellent web-site about real people who we can relate to.

Thanks

Helen Campbell
From Stuart on Friday 25 November 2005
Well Done Everyone. Our stories will live on long after we're gone.
From Owen on Thursday 24 November 2005
Well done and thank you to everyone involved with the project.
From Sarah on Tuesday 22 November 2005
Thanks to everyone who contributed to the site. It's a fantastic achievement.