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!
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Tom and Timmy Baker
Father and son share their PC stories
Tom’s Story (Timmy's Story is below)
I’m 35 years old and live in Wales, UK. It first became apparent that I had some sort of skin condition when I started to walk as blisters appeared on my feet which formed into hard calluses. No one in my family had had anything like this before and I now know that this was caused by a spontaneous genetic mutation in the K16 gene.
Over the subsequent years I saw numerous skin specialists who studied, for example, the way I walked. No-one had come across PC and so the diagnosis for many years was simply excess hard skin and was most commonly given the term plantar keratoderma.
Over the years the calluses got progressively worse so that they now cover most of my feet. Through careful management of those day-to-day activities which required time spent on my feet, I played football (soccer) competitively until the age of 12 before it became too difficult. However I still ran regularly and competed in triathlons until the age of around 20, although if I was going to run I would have to plan my day carefully so that the remainder involved minimal walking.
The pain in my feet over the last few years has increased to the point now where I walk as little as possible. I tend to ride a bike everywhere as you can typically park a bike very close to where you want to be! Having children does put a lot more pressure on needing to be on my feet, but again careful management of my day means I can do many of the activities with them. I still do a lot of sport, but this is limited now to sports where the pressure on my feet is less, so mountain biking and surfing work well in combination with careful planning of my day. Fortunately I have a desk job meaning that my feet can recover during this time.
I have tried a number of treatments for improving my feet, including acupuncture, Chinese herbal medicine and some well known drug that suppress the reproduction of skin that I can’t remember the name of anymore, but none of these had any positive effect. The best approach for me now is prescription free and avoiding allowing my feet to get hot by wearing flip flops (Tevas – they have relatively soft soles but decent support), and regular self chiropody.
I’m excited to know that there is research being carried out into the condition and that the PC Project is pushing this forward.
I’m Timmy, I’m almost 6 years old and I have PC. I have hard calluses on my feet which start as blisters. They are slowly covering all of the parts of my feet that touch the ground when I walk. My Dad has the same form of PC too.
My parents first realised that I had PC when I was one year old and was just starting to walk. A blister appeared on my foot when we were on holiday in Greece. When we got back, my Dad and I went to the doctor together to see if he could confirm if we had the same condition. But all that the doctor said was that it was “hard skin’’. We went to see a specialist at the hospital who had not come across PC before either. My Mom and Dad were so happy to find the PC Project to finally get the real diagnosis of our feet condition and know that there is research happening about what we have and they are looking to find a cure.
I was recommended insoles to wear in my shoes but these weren’t really comfortable and so I don’t wear them anymore. My Mom and Dad have tried to help me find other sports and activities that don’t involve being on my feet. I had my balance bike when I was 2 and I learned to ride a proper bike when I was 3 and a half! This means that I can ride instead of walking very far. I am also taking swimming lessons and love mountain biking.
I see a chiropodist about every three weeks who cuts the hard skin from my feet and she has been really nice. She has also helped me develop my own care plan for my feet. I’ve gotten special permission from my head teacher to wear my Croc shoes at school- I’m the only one in the school who is allowed to do this. I also change my socks at lunch time so that my feet don’t get too hot. I ride my scooter or my bike to school so that I can ‘save’ my feet for things like football after school which I love. The kids and teachers at school know about my feet but I try not to make a big deal about it.
Right now my feet generally don’t hurt too much unless I’ve been on them a lot or right after they’ve been cut. But I know as I get bigger and heavier they will start to hurt more. I’m really happy that the PC Project is working so hard to find a cure for my Dad and me.