I think I already mentioned that I am also a scientist:
well quite a while ago, in course of my regular reading, I came across a fascinating paper.its by Timothy Ley, an important scientist inthe Leukemia field (I am working in leukemia). What they did , was to sequence the entire genome (!!) of leukemic cells. Thanks to new technology, this has become possible!!! Of course I am also a patient and therefore I realized, this is an option for myself to
a.) get information about my own condition,that may help me survive, and
b.) make something good come out of a terrible disease.
Since at the time I still was at the Salk Institute (one of the top research institutes of the word!!!) I proposed a "project" to my Neurosurgeon. the deciphering of the human "Gliome" (Glioma-genome), plus I attached the Timothy Ley- Nature paper about the AML genome.
Surprisingly she didnt just laugh at it, as a crazy idea by some desperate patient, but she got interested!!! Now we will apply for funding, so that my own genome (plus also my mothers, as a control) might indeed get sequenced and compared with MY CANCER to (maybe) find out, what went terribly wrong.
Of course I know that this may not help me at all, as a matter of fact, many diseases where we know the mutation are still incurable: Chorea Huntington being only one example: We know exactly where the mutation lies, a polyglutamin stretch on the protein Huntigtin, However Having the mutation still means you will eventually die from the disease. But of course, you don't know until you try, and I think it has something, well, "poetical", to be a patient and write a research proposal about a disease that might kill me, the writer of the research proposal! If the study comes together, It will make my genome publicly available for all researchers to compare their own glioma studies to. Its a bit crazy, but it may get real!!! Imagine! Just imagine! As a matter of fact it may not get funded for the very fact that I am involved too personally, conflict of interest, may not be good for the science! Whatever happens, I will take it. But Imagine! IMAGINE!
