My Story:

Graham Tutt

Loads and loads of pain

Pachyonychia Congenita K6b N172 del

What does this mean, loads and loads of pain,
And pain again, again and again.
Don’t let it show, be like all the rest, walk normal, that’s the best,
Clench your fist and smile again and try to hide that awful pain.

Mum I am eight years old and my feet still hurt,
“I will buy new shoes and that should work”.
But Mum my feet still hurt like blinking hell, keep it quiet it’s not her fault,
She has spent all the money with the shoes she’s brought.

Please stay cold, I don’t like it hot, my feet hurt more and that’s a lot,
Try different shoes and socks that’s best, but nothing works like all the rest.
My Dad uses razor blade to cut his feet; I do the same but keep it thin,
You don’t want blood or an infection to setting in.

Hide away when you do this work, they must not know that your feet still hurt,
After all, mum spent the money to stop the pain, I can’t go moaning once again.
Walk and run like all the rest and try the hide the pain, that’s best,
Try not to hobble, that’s the best, go for a walk like all the rest.

Walking down the aisle was still the same the new shoes gave lots of pain,
Walk normal now, be like the rest, and don’t show your bride, it’s for the best.
Sail, swim and be on the sea, that’s much less walking and it’s best for me,
Hope my new son does not suffer as well; I know it hurts like bloody hell.

As a manager on a building site, don’t show the pain just walk the same,
Study every detail before you walk the site, less steps means less pain.
Try to make it through the day; you know you will always need the pay,
Walk the shadows and the cooler parts; they won’t know your feet still smart.

The doctors are all the same, none really know about the pain,
Oh my god it’s him again, he’s always walks with pain he claims.
Keep off your feet, that’s the best, and try to walk like all the rest,
Keep it quiet, they are all the same, no one understands this bloody pain.

At 62 the phone it rings, it’s my younger sister and she is the best,
She has been diagnosed unlike the rest; it does not smell but its K6b N172 del.
For the first time in 62 years, I now know why I have suppressed all these tears,
The pain that is there once again is caused by a mutation in my DNA chain.

At 64 I can now tell, why my feet have hurt like bloody hell,
At a PC Meeting only last year, I found lots of others how are all sincere.
Their feet hurt for all their years, some worst on crutches and in wheel chairs,
I can shuffle like all the rest but now have PC friends and those who care.

Graham Tutt 64, retired from construction can’t stand the pain,
But am please I met PC and will go again, and meet all those who also suffer.
My deceased mum did her best and brought me new shoes like the rest,
To all of you that suffer PC pain, I hope to meet you once again.

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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