...MYTHS ABOUT PACHYONYCHIA CONGENITA
PC MYTH BUSTING
There are many myths surrounding pachyonychia congenita. One reason for this is that PC can only be verified through genetic testing, so many of the articles written before genetic testing was available (or by authors who were unaware of its importance) state that they are reporting on 'pachyonychia congenita' when in fact they are reporting on other disorders.
Another reason for the myths is the rarity of the condition itself. Because PC is an ultra rare skin disorder, publications on PC are often based on a single family. This may easily lead to the inclusion of other conditions that are peculiar to the family but aren't related to PC. For example, if a single case study is conducted on a family that has PC but also has green hair, the article may conclude that PC causes green hair even though 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 and conditions totally unrelated to, caused by, or connected with Pachyonychia Congenita become associated with it.
Some examples of the myths include:
- 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
- Bone deformities — not related to, caused by or connected with Pachyonychia Congenita
- Cataracts and corneal lesions — not related to, caused by or connected with Pachyonychia Congenita
- Early menstrual cycle — not related to, caused by or connected with Pachyonychia Congenita
Although some individuals who have PC have been reported to have some of these conditions, based on the data collected in the International PC Research Regristry (IPCRR) on more than 250 genetically confirmed PC patients, these conditions are not in any way related to PC. It is important that editors and authors rely on data based on genetically confirmed patients and on case series of patients rather than single cases (single families) when reporting and publishing.
Websites also 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. Thick nails (pachyonychia) can have many causes that have no relationship with Pachyonychia Congenita.
We hope editors, authors and patients will join together to disseminate accurate information based on the data in the IPCRR to help in diagnosis, treatment and education.
Click here for More About Pachyonychia Congenita
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