Hello All, My name is Marion Fuller and we have recently been added to the site that Andrea has put together. I only wish, as many of you, that we, Pam and I, had found this information earlier.
Like most of you, we are very busy in life, and want to help others who have had the experience with PKS and the frustration that goes along with it. One of the things that I have noticed is that the majority of us have had hard times finding information about the syndrome and what to expect for the future.
After reading about each our your plights with the syndrome, and what we encountered, hopefully we will be able to provide information to organizations around the world about PKS and the expectations. When we had Dox's hearing study done here in Houston, we were informed that another child diagnosed with PKS had been in a few months earlier, and of course we asked that the medical staff forward our information to the parents, but without contact at this time.
We do work for the pediatrician that takes care of Dox, and through that portal we will try to infuse this information into the medical community. One of the things that we, along with many of you, encountered were the horror stories about what to expect. We were told that Dox was a dying child with three weeks to live, that was over 16 months ago, and he is still with us and doing well considering his bout with PKS.
One of the things that I find unusual is the numbers that are given to us about how many people are affected with this disorder. I personally believe that many who suffer from mild cases of PKS are not diagnosed and therefore the numbers are not reflective of the overall PKS population.
With the advent of the geonome research that has been done with the mapping of the DNA structure, and the help of us who have been PKS as part of our lives, we may be able to provide a blue print of how to eventually prevent this anomaly. (I know that this is wishful thinking on our part, but Dox has taught us not to discount the future). We have also been very encouraged by the information we have received from the site that Andrea has put together. Our outlook is much brighter for Dox than it has been in the past, and for that I thank each and every one of you. Unfortunately, the medical industry has not been able to provide us with any outlook for the future, other than let's wait and see.
Pam and I both hope to be a source for any and all who seek information on PKS, and to provide a forum to those whose lives have been affected and those yet to be.
PKS International Support GroupWe will be forever sending positive thoughts and inspiration to each and every one of you for we have new found hope with the information that you have shared.
Have a great day and a better tomorrow!
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