Talk:Hermansky–Pudlak syndrome

Physiology Mid‑importance

	This article is within the scope of WikiProject Physiology, a collaborative effort to improve the coverage of Physiology on Wikipedia. If you would like to participate, please visit the project page, where you can join the discussion and see a list of open tasks.PhysiologyWikipedia:WikiProject PhysiologyTemplate:WikiProject PhysiologyPhysiology articles
Mid	This article has been rated as Mid-importance on the importance scale.
	This article has been classified as relating to blood.

Molecular Biology: Genetics

	This article is within the scope of WikiProject Molecular Biology, a collaborative effort to improve the coverage of Molecular Biology on Wikipedia. If you would like to participate, please visit the project page, where you can join the discussion and see a list of open tasks.Molecular BiologyWikipedia:WikiProject Molecular BiologyTemplate:WikiProject Molecular BiologyMolecular Biology articles
???	This article has not yet received a rating on the importance scale.
	This article is supported by the Genetics task force (assessed as Low-importance).

Medicine: Dermatology / Hematology-oncology Low‑importance

	Medicine portal This article is within the scope of WikiProject Medicine, which recommends that medicine-related articles follow the Manual of Style for medicine-related articles and that biomedical information in any article use high-quality medical sources. Please visit the project page for details or ask questions at Wikipedia talk:WikiProject Medicine.MedicineWikipedia:WikiProject MedicineTemplate:WikiProject Medicinemedicine articles
Low	This article has been rated as Low-importance on the project's importance scale.
	This article is supported by the Dermatology task force.
	This article is supported by the Hematology-oncology task force.

Ideal sources for Wikipedia's health content are defined in the guideline Wikipedia:Identifying reliable sources (medicine) and are typically review articles. Here are links to possibly useful sources of information about Hermansky–Pudlak syndrome.

PubMed provides review articles from the past five years (limit to free review articles)
The TRIP database provides clinical publications about evidence-based medicine.
Other potential sources include: Centre for Reviews and Dissemination and CDC

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)[reply]

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 @DrMicro:, who could not have known about the misconduct. JeanOhm (talk) 01:47, 21 May 2017 (UTC)[reply]