I was really interested in comments about writing to doctors etc to make them the severity of this so called “harmless and benign”condition and the impact on the whole of your like, with the hope of more researchthe I read through with all that has been tried, and it is so sad that many things aren’t successful. In the last week I have decided to be more active and have written to some of the doctors who were part of a couple of studies that have been done on Keratosis. I explained what it is like for those with KPRF and the impact on the lives of those with it, and expressed the desire for more studies to be done.
Both replied...One doctor is a research doctor who said they were planning more studies so they would consider doing more on KPRF
The other is a dermatologist who is a director of an American hospital who replied to my 3 emails. He expressed his frustration that there was limited research into this problem and was interested that what I was expressing was just like a case of a 17 year he was trying to help. He was limited to trialling things that would improve the condition as much as possible and back g it up with the team of psychiatrists they worked with, though many patients refuse that help. He would pass on my desire for more research to his colleagues and sent me links to medical Journals. My aim is to write toany of the doctors who have written anything at all about KP, KPR, KPRF. It would be good to write but maybe we should work out a letter and agree what should be put on it to make our efforts more of a team effort and consistent in what we think needs to be done . Any one else written to someone and who?