Week 18 - Wednesday Photo Exhibition London Launch
Too exhausted to write about today’s launch - will write about this interesting experience tomorrow! I’m off to bed - having been up since 6 am (a long day by anyone’s standards, let alone a poor HepC ’sufferrer’)
March 17th, 2005 at 10:20 am
Have you heard of Haemohiliacs plight? Try living with uninvited multiple viruses given to us courtesy of the NHS Hepatitis B, C HIV and more recently exposure to CJD all through NHS treatment with infected plasma. Why were there no invitations to sick haemophiliacs in this campaign? The answere is we would embarass the government
March 17th, 2005 at 6:12 pm
Collette, You do your cause no service. If you had bothered to read
the details, you would know that the object of the Awareness Campaign
is to educate the remainder of the country about the 200,000 cases
of Hep C that have yet to be diagnosed. All haemophilliacs have been
diagnosed, compensated and offered treatment. What more do they want?
If you had bothered to turn up and talk to the volunteers there as I
did, you would have found that there were haemophilliacs there. Your
attitude will get you little sympathy or support from the vast bulk
of Hep C surrerers who did not get the virus from haemophillia, and
complaining here is inappropriate considering that Ron and others gave
their time and effort for free, and in my opinion did a damn good job.
March 18th, 2005 at 8:06 am
Collette, I am not a haemophilliac but I did get HepC from a blood transfusion. Whilst I was unable to attend the Awareness Campaign, I have to agree with Martin in that I think your comments to Ron are totally inappropriate and misplaced. Your anger and energy is best used in supporting fellow sufferers in a similar position to yourself!
March 18th, 2005 at 2:57 pm
Tink I have every sympathy that you caught your infection from whole blood transfusion.I was unable to join in with this campaign because The Haemophilia Society failed to inform its membership about it. Furthermore I made no disparaging comments on Ron’s efforts, I simply pointed out the fact that Haemophiliacs have been experimented on for 30 years with infected US plasma collected from IV drug users alcoholics and prisoners in US jails. This government and several previous have known about this treatment scandal and covered it up for 30 years, and the British public are unaware that 1200 haemophiliacs have lost their lives to HIV and Hepatitis B+C and continue to do so. This campaign has excluded the haemophilia community, and I checked with Munro Forster. We were not included in their remit to represent the 4,500 Hepatitis C infected with blood plasma, and who are still battling for treatment, diagnosis, and most certainly have not deserved the killer viruses we are now all battling. We had no choice in protecting ourselves from these diseases, nor did we abuse drugs and needle share, which is what this campagn is all about. If we had been given 2 million pounds of funding 10 years ago more of the general public would have known what was happening to us from NHS neglect for our safety. I have campaigned independently for 15 years for the government to acknowledge the harm we have suffered. I bet you are not aware that the government of the late 1970’s early 80’s were secretly collecting information on suspect plasma batches, collecting samples of dead haemophiliacs livers and testing and witholding results from patients. Sadly there are too many people ready to critisise me for speaking out, but I am in command of the facts and am hurt by yours and martin boltons’s comments
March 19th, 2005 at 8:04 am
Collette,
Ron actaully put Munro Foster in touch with me, I am a heamophiliac in the middle of treatment, your first email comes across as though you are blaming Ron which is unfair. Munro Foster contacted me some time ago and I agreed to take part in their event, for whatever reason they subsequently chose to not take me up on the offer. I suspect that they read my blog which is somewhat critical of the NHS.
Jonathan