Rachel's Story - Her nvCJD Fear Story

My name is Rachel. I am 24 years old and I was born in Yorkshire, England in 1977. I lived there until mid 1982, when my family moved out to Australia.

A couple of years ago, I received a letter from the Red Cross in my state, advising me that as I was born in the UK, and had lived there between 1980 - 1996, that I was no longer allowed to donate blood. At first I just shrugged this off with the attitude that if they don't want it (my blood), that it was fine with me and I just would not bother donating in the future, if and when they work out how exactly to screen for this disease.

As time has gone by, and I near the finish of my Bachelor of Nursing degree, I have started to think - 'My blood group is O negative, the Universal blood group. Only 9% of Australians are O neg, and there is always a shortage of it. There must be a serious concern about the chance I may develop new variant CJD, or the blood bank would still want my blood, especially with a sever shortage of O neg blood.'

The more I read about new variant CJD, the more frightened by the reality of it all I become. I have realised that one day I could be one of those statistics. It is like having a ticking time bomb sitting inside of me, except I have no way of finding out if it is really there or not. I just have to wait and see if it explodes one day or not.

I have anger; mostly my anger is directed in the direction of those who authorised and instructed that the cattle be fed on bone, offal and such like. I mean apart from anything, surely anyone in their right mind would know that as cattle are truly herbivores, that doing something as unnatural as feeding them the bone, offal etc of their ancestors, was bound to have serious repercussions of some sort. Even if these geniuses did not know what those repercussions would be.

I feel frustration that there are no difinitive answers as to whether this disease will just live in the back of mind as fear, or if it will ruin and end my life, and that of those who care about me. If I could do anything about all this, it would be to a)find a cure, b)screen all those at any level of risk, c)work out how to intercept the disease and prevent or reverse it's damage. I would not be wasting money on epidemiology in countries (ie;USA) who have virtually no problerm with the disease.

I suppose I feel as does anyone in my situation, about the not knowing and fear of what could happen. I would just like people to know how truly scary and daunting this all is for someone like me, who is sitting right in the age group most affected by new variant CJD. I wish that those who profited from the practice of feeding by-products of cattle to other cattle had been protecting the consumer more and that they had thought before they acted.

Thanks for taking the time to read my story.

Rachel. *Dark Horse*
Email: [email protected]

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