Dear All, can anyone help me with a couple of Questions,  1, Where Haemophiliacs used or played any part in the finding, or the testing in the knew test for Hepatisis c,(non a non b) in the UK in the 80s,    2 Was there  any guildlines or policy set up to test all Haemophiliacs for Hep c when the first test became availible if so when,  Best Regards ,and thanks

Glad you found it useful, John.  If I find out anything else I'll post it here.  Jut one point:  The Government are perfectly well aware that  blood wasn't  'just' infected with HIV and Hep C.  The problem we have is getting them to acknowledge it.  For example, in the case of haemophiliacs the Government knows that they have been exposed to many viruses, pathogens and other contaminents for well over twenty five years - Hep A, Hep B, Hep C, Hep G, XMRV, Parvovirus, CMV...to name but a few off the top of my head!

Good luck with your search for information - keep your eye on the website and you never know who'll come up with what!

Sue

Hi Sue many thanks yes It is all grist to the mill. I think the hard part is getting the health service interested enough to at least look into it without bias or prejudice. and accept that there was possibly more wrong with the blood and blood products they used on us than Hep C /HIV

It is as they say like drawing teeth, again many thanks for your interest

John

Hi John,

So far my friend has come up with this information that may help to shed a bit of light:

A possible role for hepatitis C virus (HCV) infection in the pathogenesis of idiopathic pulmonary fibrosis (IPF) has recently been suggested on the basis of an unusually high seroprevalence rate of anti-HCV in such patients from Japan. In an attempt to confirm these findings, we tested sera from 62 patients with IPF by two second-generation anti-HCV ELISAs. Only one serum was reactive. Serum from this patient gave an indeterminate result when tested by four-antigen RIBA (c22 band only), and it was negative for the presence of HCV RNA when tested by the reverse transcriptase polymerase chain reaction assay. HCV infection is thus no more prevalent in patients with IPF from the UK than in the general population.

http://www.facebook.com/l/4b499OF_En6iswhAQ6jl5ThMndA/www.ncbi.nlm.nih.gov/pubmed/7504894

It's not a lot but may give you some new leads.

Sue

Just noticed a thread posted on 19/7/2010  by Lorna that is to do with FIbrosing Alveolitis, can any one tell me why these time dated posts dont get resurected when another similar enquiry comes on stream   Fibrosing Alveolitus & Ideopathic Pulmonary Fibrosis are like one and the same?????????

These two threads are here on this blog seperated by 9 months how many more  connections and related Data get lost just because of a Time bar?

Best regards John

It  only gets curiouser and curiouser, According to some research If TTV is present and you were treated with Interferron it can exacerbate and Increase the incidences of the Fibrotic Lung developing Cancer.

I hope that I am not panic reading  but perhaps someone with a broader understanding of these matters medical could either alay or confirm my fears.

Watching this space John

 John they cant deny it cause it even says on the NHS website  for IPF that  Hep C can be a trigger... 

And yes your  right about the squeek... keep on at them... 

Take care..

Lesley

Hi Lesley how kind of you to respond, I think I have read this post or one very like it frrom the BLF who cover and run a forum for pulmonary conditions like IPF I have run these things past my doctor and get quite negative responses. I though am of the type who believes that it's the squeaky wheel that gets the grease so I will need to squeak in the ear of my Local MP as Viral boy should it can lead to different pieces of information being brought to the surface.

Many Thanks John

Thanks Viral Boy this is all quite alarming really. I would not even know any of this if it were not for the fact that I was one of the good guys who felt he should do his civic duty and go and donate a pint of blood as they had put out a cry as there was a shortage ....................I wonder how many people are still blissfully unaware that they have been spoilled by there unscreened  blood havoc?

 What causes IPF? 
Although we don’t know exactly what causes IPF, a number of factors are thought to trigger it off. These factors include: 

• Viral infections: Epstein-Barr virus and Hepatitis C 
• Gastro-oesophageal reflux: this is where the contents of your stomach come back up into your throat. If you inhale it, this can cause damage to your lungs 
• You may be more likely to get IPF if you are exposed to a variety of occupational dusts or if you smoke 
• There is evidence that you can inherit a tendency to develop some types of IPF - it can run in families. 

John I thought you may find this interesting if you havent already seen it... below is a link to the page I found it on...

Lesley

http://www.pulmonaryfibrosis.org.uk/

Hi Sue thank you for your speedy reply I will await further postings to see if anyone has heard of any possible connections between the two It was brought to my attention by a simple   HEP C IPF google and among other things it brought overseas research in Italy and Japan onto my page and made the connection between the two

Again Many thanks  John

Hi John,

Thanks for posting, and welcome to TB.  I was so sorry to hear about what has happened to your family.  Personally I have no knowledge of this condition, nor of a possible link with Hep C, but I am certain that someone will know something, so hang on in there and keep checking the site.  In the meantime I'll ask a friend of mine who has more extensive knowledge than me, and see what he can come up with.

Sue

Hi Folks this is my first post on here so pray forgive me if I apear clumsy

In2004 I was treated for Hep C having caught it from my wife who was given tainted blood/products following a nasty car crash. We aplied and were granted stage 1 payment from the Skipton Fund.  Now 4 weeks agoI was diagnosed with Ideopathic Pulmonary Fibrosis a condition that has a 2-5 year survival time after diagnosis     I started to look into how I could have "caught" it. One connection that did come up was a little talked about Virus called TTV (torque tenus virus) which when translated basicaly means Transfusion Transmitted Virus. I was wondering if there was any awareness of this possible connection on this site. Any information would be gratefully received.

Thanks John.