To best answer these questions, we are providing links to information on the website. Please let us know of other questions or other answers that might be included.
FAQs For Patients
HOW DO I KNOW IF I REALLY HAVE PC?
See Newly Diagnosed for suggestions on how to confirm diagnosis.
HOW SHOULD I EXPLAIN THAT EVEN THOUGH I AM MORE OR LESS FINE ONE DAY, SOME DAYS I REALLY CANNOT WALK AT ALL AND THOSE ARE THE DAYS I REALLY AM DISABLED AND NEED HELP?
See PC Pamphlets and the recently published JDNA article for support in explaining the variability of PC pain which is one of the least published but most often patient-reported features of PC.
WHAT HAVE OTHERS FOUND WORKS WELL FOR DEALING WITH THE PAIN AND DISCOMFORT OF THE CALLUSES?
Other care-related questions include:
How important is frequent trimming of the calluses and why do they hurt more if they are overgrown?
How much of the calluses is recommended to be trimmed?
What is the best way to treat the deep cracks in the skin?
See the Caring For PC videos on PC care. Also, the PC Wiki has many patient-reported suggestions.
DOES DIET/FOOD AFFECT PC?
Food does affect a person’s overall health and well being. Therefore, indirectly, food can impact the effects of PC (such as weight, energy, water retention, etc.) However, food cannot cause or correct PC mutations any more than certain foods can change a person’s eye color. PC is caused by mutations in keratin genes that are part of a person’s DNA. While some foods and substances (such as tobacco) have been linked to cancer-causing mutations, this has no relationship to the PC genetic mutations. See Genetics of PC and What Is PC for more details on the basis of PC.
PC Image Library
Clinical symptoms collected from the patient registry
FAQs For Families & Friends
IS PC CONTAGIOUS?
No. PC is not contaigious. You cannot ‘catch’ PC. The disorder is caused by a change in the DNA code in a single keratin gene.
DOES PC CAUSE INFECTIONS?
No. However, because PC nails and skin may not form as strong a barrier as unaffected nails and skin, germs may more easily pass through the nails or skin and cause infections. See the Caring For PC DVD for ideas on care to prevent infections.
NO ONE ELSE HAS PC IN OUR FAMILY. AT WHAT AGE CAN MY CHILD START TO CARE FOR HIS/HER OWN FEET?
See How To Help Those With PC which includes specific suggestions for parents.
HOW TO HELP MY CHILD WITH PC?
Request Assistance and ask for a telephone consultation or webmeeting with other parents to discuss this.
Free access to over 700 full text articles on Pachyonychia Congenita, related disorders, and research.