George’s life with PC and pain

I was born with PC in 1959 near Derby. My parents didn’t know at the time that I had PC, and they didn’t know it would be called PC, because it didn’t actually show until I was around 6 months old when the nails on both my hands and feet began to thicken. By age 6 months, I had apparently already won a baby contest, but the PC put a stop to my modeling career or the chance to be a film star.

My parents told me that as a baby I cried a lot, and my first real memories as a child are of having excruciating pains in my feet that made me scream and kept me and my dad awake all night. It was usually the pressures of blisters under the skin.

At about age 8, I was referred to Great Ormond St Hospital in London. Strangely enough, I have always remembered the doctor’s name, Dr Felix S Besser. To be honest, in the mid 60’s it was a complete waste of time. It was given a name which I never remembered (PC) when anyone asked “what’s wrong with you.” I used to go with my Grandma, so I enjoyed time with her and the train and taxi rides and being treated in London.

We soon stopped going because all I got was some sort of salty Vaseline to soften the hard skin on my feet, photographed a lot by strange doctors from all over the world, and, to be honest, we couldn’t really afford the train fares.

I never saw another doctor until I was around 21 years of age. I’d learned coping mechanisms, learned to act that nothing was wrong, lie about things that others couldn’t see, be great at making up excuses with my friends and to be proud of my thick nails. Whilst I would never show it, the only thing that got me was the pain. It was inescapable and it was 24 hours a day.

At about 21-ish, I was at university studying photography when I had a sudden collapse of really intense pain that I could no longer bare. I decided to go back home and go to the hospital and see if they had invented anything. They hadn’t, but I went through all the usual embarrassing prodding and sitting naked in front of visiting doctors who had come to look at the unusual specimen.

I retaliated once when asked to be a prize exhibit at a convention. I agreed only if I could photograph the doctors looking at me. They agreed because apparently I was very rare and they couldn’t get another like me. ‘The city doctors try to see if there’s a future left in me’; Thanks Ian Hunter.

The hospital eventually gave me Tigason. Hell, I hated that stuff. It made me feel really ill and it took some of the hard skin away. I am one of those whose feet are completely covered by thick hard skin, so it looked a bit better, but I looked and felt worse with virtually all my hair having fallen out of my whole body and my feet still in real pain.

I gave it about a year, felt abysmal all the time and still the pain never gave way. “What was the point?” I thought. I just never turned up for my next appointment.

I never gave hospitals or doctors another thought for many years until I was around thirty. I was sitting in my local pub, the Rose and Crown, with my girlfriend having a pint, when an old mate of mine, Dougie, came in with a small group. It turned out that he was with his sister and her new boyfriend. The boyfriend just happened to be head skin specialist at a hospital around 40 miles away (Leicester). I agreed to go and see him thanks to another mate of mine Wol who drove me down there. If it hadn’t been for him, I wouldn’t have been able to go because I couldn’t walk anywhere.

I was given some other tablets (no idea what they were called); they did help a little and did reduce the pain slightly. I used them for a few years; apparently it wasn’t good to take them for very long.

Anyway, I gave these up about 20 years ago and I haven’t been near a doctor or hospital since. I never cared what the nails looked like, I could brazen out anything with sarcasm, and to be honest, I didn’t know any different, I had only ever had thick nails. I always thought that the little, pale, flat ones that most people had looked weird. The smell from the blisters irritated me because I couldn’t just take my shoes off to rest my feet anywhere. The one thing that has always depressed me was, and is, the PAIN.

In the period between then and now, a mate, Alan, taught me to drive. What a blessing that was. It gave me some freedom. I got a whole load of qualifications, married Steph who I’d known since I was 18, and got a decent job in Nottingham, thanks to being taught to drive.

I have now moved to a decent job in a city 100 miles from Derby, trying to improve access for disabled people in the city. One day, I tried to remember the name that had been given to my strange hands, feet and nails.  I typed it into a search engine, getting it completely wrong but was asked “do you mean pachyonychia congenita?” I said yes and found the PC Project website. At this point, whilst I knew I wasn’t unique, I had never heard of anyone who had my impairment, nevermind met anyone. I had no idea how others coped, or if indeed they did. I read Jan’s corner and was shocked that it was me. A different background, sex, religion, and country, but me nonetheless. She parked as close as she could and cycled to get even closer. She used a wheelchair in the same way I did and hated hot weather the same as I do. Fortunately, I lived in England, and we generally only get about 10 days hot weather a year and they are usually spread out between rain storms. I joined the PC Project site and had it confirmed, by DNA, that I had a specific type of PC. I even spoke on the phone to a doctor from a university in the US.

It’s still the pain that gets me. I have what I call ‘standard days’ when the pain is just a constant bad pain, I have ‘bad days’ when I could cry because the pain is so bad, and the ‘hell days’ when I do scream and shout, when I cannot stand up, sit down, sleep or anything because the stabbing, shooting pains are incredible. I take paracetamol, ibuprofen, cuprofen, and beer. They all used to help a bit with pain relief, but I think the body gets used to them because now even taking them by what seems like the bucket full doesn’t seem to do too much to help. The pain is just getting worse.

In Britain now, as a disabled person, I feel under threat from a government that is just plain offensive to disabled people. Like the old days, we are now looked on with suspicion – as if we are all liars, scroungers, or both. We are the subject of hate crime. We have an Equality Act that is neither use nor ornament to most disabled people because we cannot afford to challenge discrimination. The Equality Act has been stopped because the government don’t want the Act anyway and they even seem to be targeting my job for redundancy.

I thank those who are looking and Mary Schwartz and the PC Project website for promoting the impairment. Please, someone find something safe to take that removes the pain. Don’t bother with the appearance of PC – if that improves as a side issue, well it’s a bonus, but really I don’t care – just take the pain away and let me have one pain free day at least before I die.