As PC is so rare, many people will never have heard of it before or met a person with PC. Therefore, you may find yourself needing to explain what PC is over and over again! How you explain your PC will depend on who you are talking to. For example, your doctor will be interested in your PC in a different way than your friends. This section gives some advice on how to explain your PC to different people
These people will not only need to understand what PC is they will also need to understand how PC feels.
PC Project can help provide resources such as brochures and scientific journal articles to help your Doctor understand what PC is (https://www.pachyonychia.org/pc-pamphlets/). However, you are the best person to tell them how PC feels. Try to be as honest as you can about your PC and how it feels. For example, tell them what hurts? Do certain activities hurt? Expand?
Sometimes your Medical Professional will want to show other doctors and dermatologists your PC. This may feel embarrassing, but this is really great news. It means that they want to help educate others about PC so that everyone knows what it is and how to help.
One of the best ways to tell your school about PC is by making an appointment and going in to speak to your teacher and head teacher or principle directly. Many parents of children with PC go in with their children to school at the start of every school year to explain the condition. Your teacher needs to know how your PC affects you. She or he needs to know sometimes you can’t walk or run around at recess/break time. Your teacher needs to know PC is not contagious. Some schools will draw up a healthcare plan which will go in your school file.
Your friends and family will need to understand how PC affects you and what you can and cannot do with your PC. You may need to explain to them that PC hurts, but that some days it hurts more than others. You may also need to help them think of activities you can do together that don’t cause you pain. There are many things you can do together that don’t involve being on your feet.
Photo of PCers at a patient support meeting with their PC wishing tree.
Strangers: Putting PC into your own words
Sometimes people don’t think before they speak and can ask rude questions about your PC. They might ask “What happened to your nails?” Or, “Why can’t you run at recess?” Or “Why do you limp?” Please try not to worry if this happens. Most people aren’t mean and are really just curious. Try to use this as an opportunity to educate them about PC. Most people will be glad that you were able to teach them something.
Some tips from children about how they explain their PC: E.g. PC stands for painful calluses!
“My nails are the same as yours – they just grow differently, that’s all.” And say it like it’s no big deal.
“I have sores and calluses on the bottoms of my feet. They make it hurt when I walk. So sometimes I can walk, but sometimes I can hardly walk at all.”
“I have a rare skin condition on my feet. It’s not contagious, but it hurts a lot.”
“I have a typo in my DNA, so no, your special cream won’t cure it.”
PC Kids Corner: