Every summer, the American Academy of Dermatology (AAD) sponsors five (5) one-week sessions of Camp Discovery -- a camp designed specifically to meet the medical needs of kids living with chronic skin conditions such as eczema, psoriasis, vitiligo, alopecia, epidermolysis bullosa, ichthyosis, or any … [Read more...] about Camp Discovery
PC Kids Corner
Living with PC for Children
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. … [Read more...] about Living with PC for Children
The brilliant things PC kids are achieving!
We like to focus on all the things PC kids CAN do, because that list is long! Please share with us all the things you as a PC kid are achieving despite having PC. Do you like to read? Ride a bike? Play with Legos? Let us know and send us a photo for this web page! One PCer, Timmy, loves … [Read more...] about The brilliant things PC kids are achieving!
Supporting PC Project and the PC Community
PC Project is a small, mainly volunteer-run charity. We rely mainly on the support of our volunteers and of individual donations as we fight for a cure for PC. You can find out more on the About PC Project page. There are many simple ways you can help us support us. Join the … [Read more...] about Supporting PC Project and the PC Community
For Parents and Caregivers
If you are a parent or caregiver of a child with PC, you are doing great and we are here to help! Because Pachyonychia Congenita is a rare disease, those who have it can feel isolated and so can their family members. Sometimes it takes going to several doctors to find a clinical diagnosis and … [Read more...] about For Parents and Caregivers
Living with PC
I think this is the section that really needs to be broken down by age: 0-5, 5-11, 12+ This section may also need to be broken down by different mutation. For example, we found that although Timmy (K16) had blisters when he was younger, his PC didn’t really impact his life until he was older … [Read more...] about Living with PC
Managing your PC with a professional
There are many medical professionals who can help you treat or manage your PC. This section details some of these people and how they can help you. It may be helpful to have a look at this section before you see a Medical Professional for the first time. In this section, PC … [Read more...] about Managing your PC with a professional
Managing your PC at home
You and your parents can learn the best ways to take care of your PC PC varies so much, between the different keratin genes involved (keratins K6a, K6b, K6c, K16 or K17) and the specific mutation. Even people who have the same mutation may look and feel differently. Having only one way of … [Read more...] about Managing your PC at home
