...MYTHS ABOUT PACHYONYCHIA CONGENITA
PC MYTH BUSTING
Because PC is an ultra rare skin disorder, publications on PC are often based on a single family. So, if a family has green hair and has PC, the article may conclude that PC causes green hair — although this is not supported by extensive research. Once published, the information based on the single family or a limited number of families, is often then quoted over and over in other articles. For example, although individuals who have PC have been reported with some of the following conditions, based on the data collected in the IRB-approved PC Research Registry on more than 225 PC patients, the following indications are not related to, caused by or connected with Pachyonychia Congenita.
- Baldness (alopecia) — not related to, caused by or connected with Pachyonychia Congenita
- Deafness — not related to, caused by or connected with Pachyonychia Congenita
- Diabetes — not related to, caused by or connected with Pachyonychia Congenita
- Mental Retardation — not related to, caused by or connected with Pachyonychia Congenita
Websites often have information that is confusing, misleading or incorrect. For example, since the word ‘Pachyonychia’ means ‘thick’ (pachy) ‘nails’ (onychia), a search for the word Pachyonychia will often return sites which list all disorders that have thickened nails. This is not an indication that these conditions are associated with the disorder Pachyonychia congenita.
EXAMPLES -
Click here for More About Pachyonychia Congenita
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- Grand Opportunity (GO) Grant awarded for research to develop effective delivery of nucleic acids (siRNA) to skin.
- New Patient Home Page rolled out at 2009 Patient Support Meeting
- Jan's Corner July/August 2009 Update.
- Clinical Study . Dr. Peter Hull, Saskatchewan, Canada has received approval for a PC clinical study on an approved drug which may reduce keratin expression for PC patients. The study has been extended and expanded to additional patients.
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www. pachyonychia.org
Launched 1 August 2008
Registration is free and gives you access to additional information and benefits for patients, medical professionals and scientists including:
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