Because PC is so rare, many people may have never heard of it or met someone with PC before. Individuals with PC may find themselves explaining the condition to others many times, and that is okay. Sharing information about PC helps increase understanding and awareness among friends, classmates, and the wider community.
How PC is explained may depend on who is being spoken to. For example, a doctor will be interested in learning about PC in a different way than friends or classmates. This section provides advice on how to explain PC to different people.
Doctors, Nurses, and Medical Professionals
These people will not only need to understand what PC is, but also how PC feels and affects daily life.
PC Project can provide resources, such as brochures and scientific journal articles, to help medical professionals better understand PC. However, the person living with PC is the best source of information about how the condition feels. It is important to be as honest as possible when describing PC and its impact. For example, explain where pain occurs and whether certain activities make symptoms worse.
Sometimes, a medical professional may want to show PC symptoms to other doctors or dermatologists. While this may feel uncomfortable or embarrassing, it is actually a positive opportunity. It means they want to help educate others about PC so that more healthcare providers understand the condition and how to provide better care. If other doctors want to learn about symptoms such as calluses or nail changes, answering their questions and sharing personal experiences can help increase awareness. People living with PC often know more about the condition than many medical professionals and can become valuable experts in their own care.
“I have a rare skin condition on my feet. It’s not contagious, but it hurts a lot.”
School
One of the best ways to tell a school about PC is by arranging a meeting with teachers and school administrators to explain the condition directly. Many parents of children with PC choose to meet with the school at the beginning of each school year, often before the first day of classes, to help teachers understand the condition and how it may affect their child.
Teachers need to understand how PC impacts daily activities, including situations where a student may not be able to walk, run, or participate fully during recess or break time. It is also important for teachers to know that PC is not contagious. Some schools may create a healthcare plan or support plan to keep important information and accommodations documented in the student’s school file.
Sharing a PC brochure with teachers can also help provide additional information about the condition. Students and families can explain how PC affects daily life, including activities that may be difficult and any support that may be needed. If necessary, PC Project may be able to provide a letter of support to help families request appropriate accommodations at school.
PC Student Guide for Teachers and Administrators
“My nails are the same as yours – they just grow differently, that’s all.”
Family and Friends
Friends and family will need to understand how PC affects daily life, including activities that may be difficult and things that can still be enjoyed. It may be helpful to explain that PC can cause pain, and that some days may be more challenging than others.
Friends and family can also help by finding activities that allow everyone to spend time together without causing discomfort. There are many enjoyable things to do that do not require being on the feet for long periods of time.
“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.”
Meeting Others for the First Time
Sometimes people may ask questions about PC without realizing that their words could be hurtful. They might ask, “What happened to your nails?” “Why can’t you run at recess?” or “Why do you limp?”
If this happens, try not to worry. Most people are not trying to be unkind; they are often just curious and may not understand PC. These moments can be an opportunity to teach others about the condition and help them learn something new. Many people will appreciate the chance to better understand PC.
Practice explaining PC in your own words. This way, if someone asks about PC unexpectedly, the condition can be explained confidently and without embarrassment. Speaking about PC in a calm and comfortable way can help others understand that it is simply a part of life and not something to be ashamed of.
The quotes throughout this page are from actual children with PC about how they explain their PC.
