Still Learning about PC

As we prepare for the upcoming patient meeting in Dundee Scotland, I am reminded that even though I’ve lived my whole life with PC, my understanding of PC has increased immensely just from meeting others with PC.

At the patient meeting in Kansas City, Missouri in 2004, I met 10 others with PC who had nails and feet that looked very different from mine. I wondered why some calluses looked so much worse than mine and why some looked so much better. I wondered why some could walk so seemingly painlessly, while others hurt much, much more. I wondered how much care and treatment played into those differences.

One person with PC had beautiful flat fingernails. They were a tiny bit raised, but for the most part, they were flat. The top smooth part also extended the length of any normal nail! (On my nails, the top part extends only half way across the nail bed and my nails are raised quite a lot.)

I asked this PCer many questions about how he cared for his nails. I was amazed that he had PC and could still have such terrific looking nails. He kindly showed me the tools he used to trim with, how he filed, in which direction, and how often and on and on. As much as I wanted to know, he graciously shared and explained to me. There were others with me who thought that if I took the time to file and trim in such a way, in time, my nails could look as flat as his. There was a sense that if you filed a certain way, you could get nails to grow a certain way.

Honestly, I wasn’t sure. For one, I wasn’t sure it would be worth the time and trouble to do all that filing. But I was very interested for my two young sons. I wondered if I could trim and file their nails at this young age, if such a change could occur for them and they could have more normal looking nails.

It wasn’t long after that that we discovered that no amount of trimming or filing would ever change my nails to look like this other person with PC. He had a different mutation from mine. And even if he had the same mutation, we all have other modifying genes that also affect the symptoms of PC. I’ve learned that everything about PC can be very different from patient to patient – from the way the feet look, the hands, skin, tongue, everything. We've found there are at least three distinct 'types' of PC nails and care doesn't change this 'type.' We learn more about PC every day through the patient participation.

From that patient meeting, and the others I’ve been to since, I’ve learned that I can’t determine the amount of pain a person experiences just from looking at their feet and judging from the amount of calluses and blisters. I’ve seen that a person with very few calluses may walk with more pain that another person whose feet are covered with calluses. There are just too many factors involved. I’ve also learned that people who have PC and can walk nearly painlessly can still suffer terrible pain from cysts.

I’ve learned that the way I deal with PC is different from many others with PC. And my way isn’t necessarily the best way. And even if my way is the best for me, I’d better not be thinking it’s the best way for another person. On the other hand, I’ve learned about some tricks and treatments, socks, shoes and insoles, and other ways of coping that I’d never thought about before that are now helping my boys and me.

Probably most importantly, I’ve learned that PCers are a strong, resilient bunch of people, who’ve figured out that life is what you make it. I’ve learned with PC you can be a successful student, attorney, businessman/woman, computer programmer, journalist, manager, mother, father, wife, or husband. And the list goes on.

My thinking about PC – and my knowledge about PC – has changed tremendously since that time two years ago when I thought perhaps I could change the direction my nails grow. And I thank the marvelous others with PC who have come to these meetings and helped me in the learning process.

I can hardly wait until the patient meeting next month in Dundee. Once again, I expect I will learn many more things – not just about my PC, but also about me as a person.