PC Community Stories

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.

 

 

 



My Story:

Victoria Barbier


Just knowing is all Victoria wanted

I am 33 years old and my story started when I was 4 years old in 1984. I felt like an alien because I had over 50 doctors from various clinics and countries all staring at my feet as it was such a rare condition. I was diagnosed at St Johns Skin Hospital in London at this age, but in the 80's there was not much support around. The diagnosis was given to me and we left. Since then I have grown up knowing I have something called Pachyonychia Congenita. I was told it just affected my nails which is why they looked like they did. The condition was not explained very well to me.

It was 2 years or so ago that I found PC Project. All I can say is "wow", such a big relief to actually find others like me and some information about my condition. It was then that I found out that the strange white substance on my tongue wasn't in fact friction like the doctors & dentists had told me, but was part of PC. I found  out the pain I suffered in my ears, that no doctor knew what it was and thought I was making it up, was in fact "first bite syndrome" which is related to PC. Also, the fact that I had many cysts throughout my childhood was another part of PC.

Finding the organisation was a turning point for me, being able to link everything up and not feel like an outcast anymore. The main issues for me were callouses & blisters. Throughout my whole life I was told that it was my weight and if I lost the weight, it would all disappear, so I lost the weight and it didn't go away. After googling PC again, 33 years later and finding the PC team, they confirmed it wasn't the case. These were all symptoms of PC. It brought a tear to my eye, the fact that I hadn't been imagining all these ailments I had and pains and suffering I had been through. I went to my first patient support meeting last year and it was the most amazing thing to be able to meet others with the condition and to meet all the professors and team. It was truly touching to see so many people working so hard for people like me and others with PC.  All of this has completely changed my life - just knowing is all I wanted.

Having all this information has in fact been a life saver for me, as my husband and I want to start a family. Having the team there I was able to get fantastic information about the genetic side of things and great knowledge about how it is passed in the family with 50% chance.  This gave us options now to look at, making us feel a lot more knowledgeable about everything, whereas before we were in the dark and clueless. Since finding PC Project I have contact with many people and made some great friends and still have on-going support from everyone.  I am looking forward to the next support meeting to see everyone again. Thank you.