Talk:Hermansky–Pudlak syndrome

Untitled
I would just like to say that the way this page is written is HORRIBLE - to someone who has a family member who MAY have this condition, it reads more like "death is a certainty by age 50" than anything. I know that's probably not the intention, but I want the author to know that my wife potentially has this syndrome (and is being tested for it), and upon learning the name, this was the first place to hit, and I was absolutely DEVASTATED at what appeared to be a prognosis. I know that Wikipedia is not a definitive source for medical information and that one should always consult a doctor, but in trying to learn about what this syndrome is, people who potentially have it and their families need to be aware that there ARE varying degrees here, and that contraction of Pulmonory Fibrosis is NOT guaranteed and that not all people who contract it present that symptom or are doomed to die by age 50.

There is NOTHING quite as upsetting as having something life-threatening presented as a certainty when it affects a loved one. I urge the author of this article to revise this and explain about the varying degrees that this can manifest in, and while it is a serious condition and there are elements that treatment options are extremely limited for, soften the blow so others don't have to go through what I went through - fearing the imminent loss of a loved one. —Preceding unsigned comment added by 66.134.182.200 (talk) 21:04, 18 July 2008 (UTC)

Edit due to retraction
Based on this Retraction Notice to: A BLOC-1 Mutation Screen Reveals that PLDN Is Mutated in Hermansky-Pudlak Syndrome Type 9., which was based on an investigaton by The United States Office of Research Integrity, which determined that the lead author, Andrew R. Cullinane “falsified and/or fabricated the results" presented in one of the figures in the paper, I have removed two sentences and reference based on that paper, which was added in good faith by, who could not have known about the misconduct. JeanOhm (talk) 01:47, 21 May 2017 (UTC)