My Story:

Allison Block

A very smart little girl!

My daughter Allison was born September 17th, 2009. She was 8 pounds, 15 ounces and 21 inches long. She did well in the hospital and came home 2 days after she was born. Over the next few weeks, I noticed a white film at the back of her mouth and her fingernails were a darker yellow color. At the time I thought the film was milk and her nails would grow out eventually. She was always a little more difficult to breast feed than my first daughter but we managed. When she was around a month old, we struggled with her night feedings and she would cry with her first few swallows and would eventually calm and eat. I now know she had “first bite syndrome”.

At her 2-month check-up, our pediatrician thought she had thrush because of the white in her throat. Allison was started on anti-fungal medication. He also noticed her fingernails. He immediately referred us on to a dermatologist for her nails because it was something he had never seen before. We saw the dermatologist the next week, and he was certain she had Pachyonychia Congenita. He tested the leukokeratosis to rule out thrush so we discontinued the antifungal medications. Next, we went to genetics and had Allison tested to confirm the diagnosis. We received the official results about 6 weeks later. Allison has PC K6A. Allison’s PC is a spontaneous mutation – we had never heard of PC before she was diagnosed. I immediately started reading and researching.

PC Project was able to provide the support and information we needed at that time. Mary spent a lot of time on the phone with us providing information. We also had a phone consultation with Dr. David Hansen.

We have been managing her PC symptoms ever since. She had her first signs of callous on her feet at about 10 months old when she was up in the bouncer and standing more. At that time, the calluses would show up and then the skin would fall off. As she gets older, some of it still falls off but now she has some constant calluses on her feet. The time of year and weather seems to make a difference with how much callusing is present.

Allison is now 4 ½ years old. She is an active, smart, and busy little girl. She doesn’t let anything stop her. At 4 she knows her fingernails and feet are different and occasionally will ask why she is different than her older sister Erin (6). We file her fingernails down with a manicuring tool. As a treat, we usually paint her nails after we file them. We also try to put lotion on her feet daily and shave calluses down whenever she will let us. She already tells us when she wants some skin removed. We also buy her the best shoes and wicking socks we can find to giver her cushion and reduce friction as much as possible. If her shoes start to get a little tight, her calluses seem to increase.

Allison is very smart. When asked what her full name was, at her 4-year-old doctor appointment, she didn’t just state her name, she spelled her first and last name for the nurse. She is curious and asks a lot of questions.  She is always trying to keep up with her sister.

We are an active family. Allison was involved in swim team this year and swam in two swim meets. She swam 25yard freestyle and 25-yard backstroke. She also ice-skated, cross-country skied, and downhill-skied during the winter. Allison has taken gymnastics classes and loves to ride her bike. She is planning to play soccer this summer. At times she will complain of some pain in her feet. Our goal is to expose her to a lot of activities so she can choose what she really wants to do in the future. I dread the day that she may have to give something up because of foot pain.


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!

Jan's Corner

The "Living With PC: Jan's Corner" posts from 2003-2012 were very popular and are now accessible in the Living With PC Archive. You may read individual topics or use the free download link for the complete collection of Jan's Corner in E-book formant. Also, these posts are indexed and available on the PC Wiki so you can search for a specific word or topic. You may also Connect With Us to order a printed bound copy of the blog.
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