Nine hospital patients may have been exposed to CJDBMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7245.1296/a (Published 13 May 2000) Cite this as: BMJ 2000;320:1296
All rapid responses
Over the past 11 months I have watched CJD slowly take my father from
this world. The fact that we know so little about its causes is amazing
to me. The fact that we pay so little attention to its ability to infect
others is heart wrenching. Everyone should take its precautions very
seriously. If you have ever witnessed the devastation of this disease,
you would not hesitate for a moment to do whatever you had to do to
prevent its transmission.
I have found several people who also have had
first hand experience with this "killer". All have expressed the
devastation that it was able to do to their lives and the helplessness
that they felt during its rapid overthrow of their loved one. I cannot
believe that this is a 1/1,000,000 disease. I have met people who have
had both friends and family members afflicted with this disease within an
8 mile radius! This certainly does not coincide with the "numbers" given
to us by all of the research.
I truly feel that this needs to be taken
more seriously. I personally am trying to do all that I can to promote
funds for research and to make people more aware of this disease. It does
indeed exist and it is not something that you want to be a part of. I had
a classmate who was killed in the terrorist attack of Pan Am Flight 103.
I thought that that would be the most bizarre experience of my life --
that a friend and classmate from my small town would be killed by a
terrorist. However, this unforgiving disease that has taken my father
from me is just as baffling to me....I look at him and I know that he is
there, somewhere. Their are brief windows of time when I think that he
recognizes me, understands me, and wants to tell me something. But he
can't. Those times are so frustrating for me. I just want to shout
"Where are you, daddy?" I know he is there somewhere. I just can't reach
him. I try to inspire a response through music (he does respond),
conversation (he seems to listen intently and look to find me if I stop
the conversation midway through) and by touching him (He will "pucker" his
lips to kiss me hello/goodbye). I never want anyone to experience this
agony. It is no longer acceptable for people to say that "we just don't
know enough about this disease because it is so rare". It has killed
mothers, fathers, brothers, sisters, etc. around the world.
How can we
ignore it any longer? I have written personal accounts of this disease,
researched the backgrounds of the victims, contacted distraught and
devastated family members. I have an abundance of information that I
would like to share. These people can not die unnoticed or without
helping the world know more about this silent killer. If anyone is
interested in my research/material, I am more than willing to share it.
My goal is to publish some of this material in an effort to raise
awareness. We can no longer ignore precautions. I would like to know the
answer to my question: Where are you, daddy? I never want another person
to have to sit next to the one that they love and ask this.
Competing interests: No competing interests