PC varies in how and when it starts impacting the lives for children. It can depend on age, mutation, and the child.
How will PC affect me as I grow? Does PC get worse with age? When do all the symptoms and pain kick in? These questions are hard to answer as it is different for each individual. One family found that although their young son with PC-K16 had blisters when he was younger, his PC didn’t really impact his life until he was older probably 6 or 7 years old. And now that he’s 11, his PC is really impacting him. This experience will be different for everyone with PC.
Will PC limit my future?
Pachyonychia Congenita may impact on how you participate in recreational activities and which jobs you want in the future, but PC doesn’t have to hold anyone back. Say you want to go to an amusement park but cannot handle standing on your painful feet. Some amusement parks have special accommodations for people who struggle with walking. Others with PC may decide to use a wheelchair throughout the park. You will get really good at figuring out how much you can do on your feet and when you will need to stop.
When deciding what you want to do for your career, you can find out more about different jobs, even visit with someone in that field. Sometimes you can make arrangements to make a situation work with your PC. Our best tip is to work hard in school and be a responsible person. When you are older, look for and even train and prepare for jobs and careers that will allow you to mostly sit down while you work.
What to do during School Trips?
It helps if you have already discussed PC with the school and teachers before the year began. Find out the details about the trip and make arrangements so you can participate without making your symptoms worse.
What about college/university?
You can go to any college or university. Again, one of the best ways is to be open about your pachyonychia congenita with the college by going in to speak with the counselors and teachers directly. As the buildings are far apart, biking is a great way to get from class to class. Some universities will require additional supporting information for certain accommodations. This is where your genetic testing report or a letter from PC Project can assist. At PC Project, we have prepared letters to get special accommodations that helped them be successful in school or work with PC.
Siblings and family life
(e.g. tips for maintaining balance)
WYNTK: tips here?