James has felt a genuine bond of dedication and a feeling of warmth and love within the PC family.

From a young infant, I knew I was different from the other children I was around. As a youngster, you know you’re different, but you don’t ask or say anything to anyone. You just get on with things. I suppose because my mother and gran and other members of my mother’s family were the same, I didn’t think anything of it. At that time in the 1960’s, my mother and others did not know anything about this condition, PC.

What I can tell you is that I always struggled with sore feet and I could see my nails were UGLY to look at and not like others around me. My family on my father’s side were very good footballers – as was I – but I could not last the full game like the guys playing with us. I was in a lot of PAIN, with mainly my feet aching. Like any young lad, I loved playing football. My father had a boy’s football team who played around the city of Glasgow. I remember how upset I would be to find I was not picked to start a match or, if starting, I was substituted part of the way into the game. I was so excited to be named in the team at the start of a game! Although I knew that I would not last the whole game, each time I would go through the same pain, hurt, and emotions when substituted.

As an adult, I continued to live with the pain in my feet. Then I suffered other types of pain caused from abscesses and lumps (cysts) on all areas of my body, adding discomfort and some times greater pain than the sore feet.  I just got on with life as tough as it was. I’ve never had a lot of confidence in my life. I’ve always sat in the background, feeling second best. Today I feel much the same. Going through life with the ups and downs so-to-speak, I questioned, WHY ME? Although other members of my family have this condition, now known to me, I still feel very much alone. I live with this on my own.

I was taken back, with words I can’t find, to know that other people outside my family group sadly suffer like I do. I feel most upset to know other good people worldwide are in pain. In another way, it is like having a family again. When saying that, I mean NOT just the people with PC, but the wonderful professors and doctors all over the world taking the time to look for answers. There is a genuine bond of dedication and a feeling of warmth and love within the PC family. I, James Wark, would like to say for everyone who suffers and the people connected to the PC Project a special thank you.