My Story:

Janice Schwartz

Janice was diagnosed at birth with a spontaneous mutation of Pachyonychia Congenita.

Janice married David Schwartz in 1993 and she is the reason that PC Project was organized. Dave and Jan have three sons, Sam, Nate and Spencer; and one daughter, Rebecca.

Janice serves as PC Project Patient Advocate. She wrote the monthly “Life With PC” from 2003 to 2012. Here is her post in September 2003 when we first began to organize PC Project. Click Here to access the Living With PC Archive.

Pachyonychia Congenita? (PC) Thirty-five years it’s been a part of my life and I can still barely spell it! How excited I am about this Pachyonychia Project! This is even more exciting than the introduction of the World Wide Web, when I could connect for the first time with other people who had PC, and realize not only was I not alone, but there were others who knew exactly what an infected nail feels like, or understand the difficulty and pain of walking with blisters on the soles of your feet. Now, here we are, embarking on a project we hope is instrumental in finding THE CURE FOR PC. Even if it takes 20 years, what’s 20 years when generations can be helped?


schwartz-family schwartz-nateandsam

PCers have a great attitude

It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.'  That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!

Jan's Corner

The "Living With PC: Jan's Corner" posts from 2003-2012 were very popular and are now accessible in the Living With PC Archive. You may read individual topics or use the free download link for the complete collection of Jan's Corner in E-book formant. Also, these posts are indexed and available on the PC Wiki so you can search for a specific word or topic. You may also Connect With Us to order a printed bound copy of the blog.
PC Patient Registry
Learn why this international registry of PC patients is so crucial to the worldwide efforts to find treatments and a cure for PC