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Janice N. Schwartz was diagnosed at birth with a spontaneous mutation of Pachyonychia Congenita. She married David Schwartz in 1993 and they are the parents of 3 sons, Sam, Nate and Spencer. Two of the boys have PC.

E-mail Janice at Jan.Schwartz@pachyonychia.org

This month, you may have heard the news that the 2006 Nobel Prize for Medicine was awarded to Craig Mello and Andrew Fire, two American scientists “whose discovery of RNA interference has revolutionized the science of genetics. In discovering that specific genes can be silenced through RNA interference, therapeutics are now being researched to treat, among other things, genetic diseases.”

PC research has been directly affected by this incredible discovery. The most promising research being done right now for PC patients is in the field of RNA interference. Already, scientists affiliated with PC Project have successfully inhibited the expression of the K6a gene in both tissue cultures (cells in a dish) and in mice. The treatment has been given “Orphan Product” status through the FDA meaning it has a special process at the FDA because it is for an ultra rare (called Orphan) disease.

Currently, toxicology studies are being performed to test the safety of this treatment. The treatment is given to mice over a period of 28 days and dozens of tests are performed to check all of the their organs and measure every possible thing to be sure there are no problems with the treatment. Better to experiment on mice (although very expensive) than on humans! This is necessary before our scientists are able to apply for FDA approval for human clinical trials. This is remarkably fast progress.

Since PC Project begun about three years ago, I have been awed and amazed at the timing of things. How incredible that just eight years ago, these Nobel Prize winners first made this remarkable discovery and now, our very own PC scientists are working to make this knowledge applicable to our skin disorder.

Just today, Mary and I were reminiscing about how one of the main scientists, who is working on RNA interference for PC Project, came to be part of our group. It’s nothing short of a miracle that Roger Kaspar came to our first meeting at Park City in 2004. He wasn’t on our original list of scientists, but Dr. Leachman wanted to include something on RNA interference as one of the possible approaches for PC. A colleague at the UofU told her about Prof. Kaspar and although invited at the last minute, he came to Park City and made a presentation on his work (called hairpin RNA).

Everyone was impressed that after Prof. Kaspar listened to what the other scientists had to say about PC research possibilities, he told the group he thought some of the other approaches such as siRNA were more applicable to possible PC research than the hairpin research he had presented. We thought perhaps that was the end of his research contributions to PC. But Roger Kaspar didn’t forget about us. And through a series of small, significant events (one including lunch with us in a hospital cafeteria as he was passing through Salt Lake City), Prof. Kaspar made a career change and partnered with PC Project to start a small biotech company that is devoted to PC research, primarily with siRNA interference!

I could tell you amazing stories about all the main scientists who are working together to find a cure for PC. The timing is too uncanny to be ignored. These scientists each seem to step in with their contributions at just the right time in the research process – and in the patient support process. Many, many times, Mary and I both have shed tears of gratitude for them.

I will probably never meet in person with Professors Mello and Fire. But I thank them for the countless hours they surely spent in their labs to discover something that may truly be applicable to me, my boys, and all my PC friends. I also thank the scientists I do know, for their time and efforts in making the findings of Mello and Fire something that has given me, for the first time in my life, hope of walking pain-free someday. Our PC scientists may not be the Nobel Prize winners this year, but they truly emulate the word “noble” to me. Thanks to all of you!

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.

Last week, I was privileged to sit in on the two-day International Pachyonychia Congentia Consortium (IPCC) Symposium held in Philadelphia. The meeting was held prior to the annual meeting of the Society of Investigative Dermatology (SID) as an associate meeting of that large gathering.

Because this is a scientist only meeting, let me give you a glimpse of how our IPCC meetings work. I tell you because I think it is a unique way that our group collaborates and gets things done.

About 35 scientists and doctors participated in the IPCC meeting. The scientists sit at tables that are set up in a U-shape with the top of U the front of the room where there is a screen and a podium for giving presentations. The room is set up that way because as important as the presentations are, even more important are the discussions among scientists after each presentation or group of presentations. Most of the presentations at this last meeting were based on PC research that was done in the past year or on new science that can have applications to PC research.

As a group, these brilliant minds team up to help one another. They listen and observe, then give insights and suggestions - all for the purpose of finding specific ways to cross the next bridge, overcome current obstacles, or chose the next steps in the quest for reaching a treatment or cure for PC. The title of this year's meeting was "Envision Success: PC Clinical Trials" and the disscussions focused on selecting the most effective strategies to reach clinical trials as soon as possible.

Sometimes the group decides one direction isn’t as effective as another. The discussion is open and honest. In that setting they brainstorm and make choices on what research avenues are the most viable and effective. They choose a course of action for the next steps on other projects. If one lab is doing something, another lab will offer resources or volunteer help or means to move the process along. The collaboration is unbelievable.

And in case you wonder where I am in all this, Mary and I sit at a table in the back, not in the main group. We are not scientists. We listen, learn, take notes, and say our prayers of thanks. And thankful we are. At one point in this two-day meeting of presentations and collaborative discussion, I sat there, simply overwhelmed that these incredible scientists and doctors from around the world were there, talking and planning about MY rare disease. One example is I saw actual photographs of PC inhibitors working in mice. The photos were taken within just the past weeks. If that’s not enough to make a person overcome with gratitude after a life of no hope, I don’t know what is!

On the second day, a question was asked of the group by a researcher who hadn’t been to a previous meeting how many people had PC. Another doctor, who was also participating for the first time responded something to the effect of, “From the looks of this gathering here, you would think one in 60 people had PC!” (Of course in this group 1 in 60 did have PC!) However, this exchange made me realize – though I knew it before – how absolutely incredible it is that not only were these scientists interested in PC research, but the caliber, the expertise of these individuals is unprecedented. They are the world leaders in keratin research! The way they have bonded together and come on board with us at PC Project is simply remarkable, if not miraculous. The core researchers have been with us from the first meeting in Park City just over two years ago. Others have joined the group at just the time we needed their specific expertise. Others have come to bring new ideas and contribute advice and suggestions gained in other areas.

In the week since this IPCC meeting, there’s already been a flurry of activity among the scientists that has come as a direct result of the meeting. At least a dozen collaborations (one lab doing staining needed by another lab, one lab sending cells for another lab to use in an experiment, etc.) We believe everyone left the IPCC meeting motivated – or STILL motivated is probably more accurate – in helping the PC cause.

We are working to post a report of the scientific presentations related to PC that were presented at the main SID meetings so you can see all that has been accomplished for PC and you can see the details. But one thing to note right now is that some of the cutting edge science that is being done for PC was mentioned by the keynote speech at the beginning of the SID meeting given to thousands of dematological researchers. It’s real science and exciting science as well.

Lately my 11-year old son has been waking up every night because his feet are “burning.” He has all the sores and calluses that I do and they look like they always have with no extra infections - so what’s wrong? What’s making his feet hurt so badly right now? When he wakes me up to tell me about the pain, I take notice of my own feet. I notice they are “burning” too. Even while I sit here typing, I feel the burning. But am I just so used to it that it’s no longer a big issue for me?

I remember once as a young adult my feet hurting extra badly for no apparent reason. I made an appointment to see a dermatologist who knew me well - and my PC symptoms. When he saw my feet he said he expected them to look a lot worse than they did. I remember feeling a bit badly about that. How bad do my feet have to look for someone to believe the pain is severe?

As for my son, is he now just coming into a stage of PC where he will begin to feel pain almost always? Will he get used to it? I have PC yet I still feel so helpless. There are some things I can do to help my boy feel a degree of pain relief, but for the most part, I fear he will feel this constant pain for the long haul – at least until the cure comes…

Today I spoke on the phone with a man with PC who found us through this website. When I first said hello, the man was overcome with emotion. He could hardly believe he was speaking with another person with PC. And even more so, he was moved that finally, something is being done for people with PC – a website, a support system, and above all, research.

This incident is not an isolated one. It’s almost a repeat of nearly every call I’ve had with people who discovered PC Project for the first time. I’ve also been to patient meetings where people meet for the first time and burst into tears. There’s so much emotion involved for all of us after spending so much of our lives feeling all alone in dealing with PC.

Now that I’ve been meeting with people with PC for over two years since the Project began, I have to look back and remember how emotional it was for me the first time I talked with someone with PC. What a thrill it was for me to actually talk with someone over the phone, through the internet, and then finally meet another person with PC.

I will say this, though – having met and contacted so many PCers has not diminished in any way the thrill and excitement I feel EVERY time a new person with PC finds us. It’s as exciting as the very first person ever to email in to PC Project. When Mary and I saw that email, we got so excited that PCers were out there, looking anxiously for some hope, looking for a PC Project! It’s made us both realize how very important this Project is – to me – and to all PCers.

Today, when I talked with this man, I was inspired and edified by him. I hung up the phone smiling and on a high. It was like Christmas day -- and lives changing other lives as we all benefit from each other, is the best gift of all.

Included in the 2006 plans are another patient meeting in Scotland, several important scientific gatherings for PC researchers, and probably most importantly, all the behind the scenes research that is occurring in labs around the world. If last year’s history is any indication, PC Project will continue to move forward at breakneck speed. I still need reality checks to comprehend this is really happening.

Amidst it all, my heart is warmed by the goodness of so many people. Mary’s sister in Florida sent 100 PC brochures to people she knows and many sent in contributions of $5, $10, $50, and $100. I wrote an email to my immediate family, telling them how to shop through the website to help us raise funds. In turn, my sister-in-law emailed my letter to many people she knows. I know many of you have told your friends about the shopping portal on our PC site. Suzanne, a PCer in England, has now set up similar fundraising shopping opportunities in Europe. PCers in France are setting up their own local support network to help with translations and fundraising efforts. Other PCers are looking out all the time for new products, shoes, creams, etc. and reporting back on their effectiveness. I could go on and on. Others are contributing in monetary ways – and no matter how big or small, not only does every cent go directly to research, it ensures our status as a charity.

In addition, the release of the PC-specific JID publication has put “pachyonychia congenita” on the brains of dermatologists and scientists worldwide. Now, when a new PC patient goes to a doctor for help, there is a definitive resource to turn to for help. And just yesterday, a researcher emailed me to ask if he could use a photo to use in a presentation at a medical research conference to promote the PC cause and encourage researchers to check out our website. I could share many more examples of helping individuals in the medical and scientific world. PC is definitely getting “on the research map.”

And so, on my wish list for 2006 is the hope that as many people as possible around the world can “find” PC Project. I know there are many more PCers out there but language and different situations are surely barriers. And, I hope that each one will participate in the research registry – especially so they can be genetically tested to know their exact mutations. When I think of the progress of the research, I don't want any PCer left 'undiscovered.' But all in good time… Besides, look where we were two years ago and look at us now. Inconceivable – except that’s it’s all really true! Welcome 2006!

Today I made a $6.38 donation to PC Project. We’ll, sort of. I actually wanted to buy some things at one of my favorite on-line shopping stores, Eddie Bauer. But instead of going straight to the Eddie Bauer website, I first got on this – the PC Project website -and checked the box “Help us Raise Funds by Shopping Through our Marketplace.” (You can even see the box at the left of the page while you’re reading this Jan’s Corner right now.) So I clicked that box, typed in “Eddie” in the search box and there was the same old Eddie Bauer website I’ve shopped at many times previously. I proceeded to shop, placed my order, and about a week later my purchases were delivered to my door, same old deal.

And then today, about two weeks after placing that order, PC Project got a statement in the mail saying Eddie Bauer had donated $6.38 to PC Project because of my purchase! I was so excited – and it was all for things I was going to purchase anyway.

Now maybe $6.38 doesn’t seem like that very much money, but it was thrilling for me to know that I had done something so very simple and PC Project had received that much more money to go directly towards research.

I am just one person, and in the big scheme of things, I really don’t do a lot, but that day, I made a difference. I’ve checked out all the stores that are listed on that “Fundraising Marketplace” and found not only do I shop at a number of them, my friends and family members do too. (I’m now telling them all about how to go through our website to shop.) I cringe to think I’ve actually bought things online from some of those stores without accessing them first through PC Project’s website. Never again – it’s too easy to not help in such a simple way. Of course, I won’t buy things unless I really intend to purchase them, but with sore feet, online shopping has always been a good investment for me. And besides, it’s the least I can do for a Project that’s dedicated to helping me and my boys walk free of pain someday.

Right now the weather is perfect here in Utah. After a hot summer, it feels heavenly in the upper 70’s. The mountains are radiant with the changing colors of the leaves. It’s a perfect time for my feet, and it’s a perfect time for my favorite outdoor activity - bike riding.

Though there are sports I’ve always wished I could play, especially racquetball and basketball, the one thing I can do is ride a bike. I don’t have sores on the arches of my feet, so that’s where I press the pedals. Also, because biking isn’t a weight bearing exercise, even when my feet are quite sore, I can still usually do it.

I have a stationary bike for indoors which I ride quite a bit. But outdoors, I really love bicycling. For a person who spends most of my walking time limping or on crutches -both painful - riding a bike, the faster, the better, with the wind blowing in my face is absolutely exhilarating! As long as there aren’t too many stops en route where I have to put a foot down, it’s pretty much a pain-free activity.

If I have an actual destination, not just a ride, on a bike, I can often get a closer “parking spot” than in a car. In fact, while I attended college, where parking was always a mess, I would ride my bike carrying my crutches to campus and work. These days, I ride my bike to meetings, my children’s school, and other places where the walking isn’t too far once I’m off my bike.

Too often we think of things we can’t do with PC. Biking isn’t one of them. In addition, there’s numerous weight lifting exercises that can be done that don’t require much – if any - pressure on the feet. Swimming is another great option. Of course, my feet are very sore and tender for a day or so after I swim, so I only do it if I know I don’t have many walking obligations afterward. When I see others who are even more limited by physical challenges, I’m so grateful for the many things I can do. I’d love to hear what other PCers enjoy and CAN do for recreation and exercise.

I’m happy to report the weather temperature in Utah is back in the 90’s, and life with PC is once again bearable. I appreciate the fact that I can moan and groan in this Corner and still find people who are not only non judgmental, but who can empathize perfectly. I promise, I really don’t think I whine too much in my life (okay, maybe I do), but every now and then, it’s so nice to just vent. And I’d only do it to you. Most people I associate with really have no idea what I’m going through. Thanks for sharing your own experiences and for your letters of support. And what a support group you are!

This month I’m going to include a limerick from another great supporter - my mom. She is always writing little poems and songs and recently sent this to me. She wrote the limerick for me, but I think it can apply to all of us PCers. Thanks mom!

There lives a fun girl we call Jan
Who likes to do all that she can.
And though she is slow
She's eager to go.
On crutches it seems that she ran.

A problem we like to call Pac
Has put us all way out of whack.
But what ere the trouble
We just have to double
Our smiles so we don't go "Bezack".

P.S. We're all looking forward to the Patient Support Meeting in Niagara Falls!

Last May, for Jan’s Corner, I talked about the pain we’d all be dealing with as the weather got hotter. This month, I’d just like to whine and yell, “Uncle! I’ve had enough!” Is that okay? Everyone thinks I’m so strong and enduring. This month, I say to those adjectives, “Blah, blah, blah.” Sometimes I get tired of being tough – and I’m really not as tough as some people think I am anyway.

Last night I was working with some of the neat leaders at PC Project and I was asking about the pain. I wanted to understand why we PCers hurt even when we are just sitting with our feet up! I was given a very good medical explanation that there are callouses and conditions with keratodermas that are not painful...but physicians believe PC is a blistering condition. So even though I can't see anything but a callous and can't see a blister, underneath there is a space -- and even if that space isn't filled with fluid, the nerve endings are feeling that space = PAIN. Our feet hurt like crazy because of what’s going on underneath the callous.

A good explanation helps, but it still didn’t prevent me from dreading the move from my seat in the office, down some stairs and to my car when it was time to go home. Since my feet hurt so much just sitting there, I actually envisioned in my mind how I was going to get to my car several times before I actually started to move. And this mental role play started about an hour before I even left. Is that pathetic or what?

For me, dealing with pain is such a mental thing - maybe even more mental than physical. I have to mentally gear up for any errands or activities where I know I’ll be counting every step I take. And I’m tired of it. It’s physically tiring and it’s mentally tiring. And I’m also tired of feeling pain every waking moment. I’m tired of the ache in my feet and legs that goes with the pain. I’m tired of going to sleep every night and feeling pain, and I’m tired of waking up to it as well. There is no break.

I know it will be a bit better when the weather cools off. I know I need to just hang in there, because there are times of the year when I can actually not feel my feet hurting when I’m sitting or laying down. But that time is not now. And I know from several of you that I’m not the only one. Maybe that’s why I’m justifying putting such a whiney entry in here this month. I’m whining on behalf of all you PCers out there that tell me in private that you’re miserable, but are strong, tough, and enduring in public. I admire you so much and I know you understand. I hate that YOU are hurting, though it is nice to know I’m not alone. So I’ll say it one more time for all of us – I’m tired of pain!

Not too long ago, Mary, our PC Project Director, asked our friends with PC if they had any ideas to help friends and family understand PC. One of them sent a little “exercise” which I thought was terrific, because it truly is so hard to help people have a clue of what it’s like to have PC. And maybe, others don’t really need to understand, but I think sometimes it helps for people close to you, who are going to be in your life for a significant amount of time, to at least have some kind of understanding. So thanks to this fellow PC friend, who told me I could publish it here.
“An Exercise In Understanding The Restrictions Of PC”
Pick an average day to try this exercise.

You will need: A pair of sensible, flat, thick soled shoes and a pedometer/step counter (or a good memory!).

Rules:
1. You may only walk a total of 500 steps per day
2. You may only stand for up to 20 minutes per day in no more than 5 minute lots.
3. For every solid hour you can stay off of your feet, you may add 50 steps to your total for the day.
4. You are not allowed to tell anyone, other than your close family and friends, what you are doing.
5. You must avoid uneven or rough ground.

Hints and Tips:
Try and park as close as you can to where you need to be, this may involve getting to work or shops earlier than normal to try and get a better space.
Go to smaller shops or order shopping to be collected or delivered.
Visit banks/post offices etc in off peak times to avoid queues.
Take a packed lunch to work to save having to go out.
Slide around on chair to filing cabinets/printer/fax etc.
If you have to get up, think what else you can do at the same time.
Ask others to pass things to you or deliver things for you.

Remember, this is just a lighthearted game, but if you can't do it, then neither can we.

Thanks PC friend for sharing. And as this friend noted to me, the distances and times in the rules may be different for each PCer as our symptoms vary. The only thing I might add is a Rule #6 - All standing, walking, and excess sitting is done with constant pain – and the longer you stand or walk, the more intense the pain is and the more likely you’ll face even more pain, plus blisters and possibly infections later on as a result. But really, we wouldn’t wish that pain on anyone – even if it would help them understand PC better.

Summertime...and the living ain't easy for PCers! We’ve had an unseasonably wet, cold spring this year here in Utah and it has spoiled me because the cool weather is so much nicer for my feet. Now, suddenly, the temperature has jumped 30 degrees in just a few days and my feet are FEELING it. My feet hurt all year round, but the hotter the temperature, the worse they feel.

What’s more, I hate seeing my boys’ feet hurt. They are now getting new blisters, some developing as part, or to the sides, of their main calluses, and some blisters are popping up in places on their feet where there are no regular calluses at all. What a literal pain. I hate to see my boys hurt.

I watched Nate play soccer the other day. He has strong feelings about being an asset to his team. He ran all over the field and I couldn’t tell at all that he has sore feet – until he finished playing and badly limped off the field. No one on Nate’s team knows he has PC. Sam sang in a choir concert that same day. He stood and sang his heart out. Then, when it was over, Dave piggybacked him on the long walk to the car. No one in Sam’s choir knows his feet hurt either. People have no idea what these little PCers go through on any given day.

My boys can still tough out the activities they like to do. But no matter how much they tough it out, they will still feel the after effects of walking or running on their feet. The damage shows when they walk through the door and fall to their knees. And when we carefully trim their throbbing sores or lance their blisters.

But, now this heat will slow them down a bit. So we’re cranking the air-conditioner, wearing sandals (or no shoes at all), soaking our feet in cool water, and hoping our feet acclimatize somewhat to the hotter weather. I always have big plans for summer time, especially with the kids soon to be out of school, but when the heat sets in, the best laid plans seem to often take back burner to just coping with the pain.

Wicking Socks! I’m addicted to a new kind of socks – wicking socks. Typically, if I wear socks and shoes for any length of time, my sores get soggy and painful – I mean, MORE painful than their usual pain – even if I’m sitting down. Last fall, Mary saw an article about socks that hikers and athletes wear. They are made with synthetic fibers that wick away the moisture from feet and claim to be anti-blistering.

Since then, I’ve done my first non-official clinical trial with these types of socks. I have tried a number of different kinds of these types of socks. Today, I report that I will never go back to cotton, or any other kind of socks I used to wear in the past. These new wicking socks have saved my foot life.

I particularly like socks that have “Cool Max” in them. It’s harder to find them in regular stores. I usually have to get them at “outdoor recreation” stores. And they are a bit expensive. What I’ve done though, because there are so many out there, is buy only one pair at a time. I’ve worn them and washed them a few times. This way I know which ones react best with my feet. I like the socks that have nice padding (but not too thick – usually “medium” thickness) and still stay soft after being washed. The “Thorlo” brand is my personal favorite. My feet aren’t soggy and clammy like they used to be when I’ve worn socks and shoes. This has significantly reduced the terrible itching that usually comes when I take off my shoes, and most of all, I can wear socks and shoes longer before the pain of simply wearing them starts setting it.

Now, wicking socks aren’t a cure, and I still hurt when I walk, but they have helped me considerably enough that I am hooked for life. It’s amazing I’ve gone so many years not knowing about socks that wick away moisture. It just goes to show there may be other small and simple things out there that could help us PCers – we just might not have thought of them or found them all yet.

Last month, several of us PCers here in the Salt Lake valley went to the University of Utah Dermatology clinic for Grand Rounds. Grand Rounds is an occasion for doctors and medical residents from both the University of Utah and the surrounding area to come and see different kinds of skin conditions.   What happens is we – the patients – go into an examining room. Then, for the next hour (or less), doctors come in and out of the room, sometimes in groups, sometimes one at a time, and look at our nails, hands, feet, tongue, skin, and so on. This is a chance for these doctors to see rare conditions and learn more about them. In the past, in such a situation, I might have felt like I was some kind of freak show at a circus. Not anymore.

When my doctor asks me about attending a Grand Rounds session, I’m more than happy to come. It’s different now that I’m involved with PC Project. I want to educate just as many doctors about PC as I possibly can. In fact, in the examining room, I don’t just sit there and wait for them to ask me about PC. If they don’t ask to see one of my symptoms, I show them, and tell them as much as I can. I want them to understand and learn as much as possible about PC. At this point, it may not make that much of a difference in my life, but I hope that if these doctors, many of them just starting out or still in school, ever come across another person with PC, they will know better how to care for that person. I’ve been at some Grand Rounds where I’ve been the only patient in the room. However, the last few times I’ve had great fun, because I’ve had others with PC who live in Salt Lake City, whom I’ve met through PC Project, come with me. Last month there were four of us in the same room. We had a great time, joking, laughing and showing off our PC.   Because we weren’t all related, it was a neat opportunity to show all these medical people the different ways PC affects different people. What was even neater is after Grand Rounds, the medical folks all went to a special presentation specifically about PC, put on by yes, you guessed it, Dr. Sancy Leachman. Thanks to her, many dermatologists in Salt Lake City, and many up and coming doctors who will leave this area and practice medicine in other places, now know more about PC than ever before.

I’m also grateful for the Salt Lake City PC friends I’ve made here. Whenever Dr. Leachman has needed anything – from photos of symptoms to even skin biopsies – they have willingly participated in whatever has been needed to further the cause of research and understanding of PC. We’ve also had some nice social occasions together as well, always filled with lots of laughter and good talk. What a difference people can make in the lives of each other as we boost each other up. It’s like having a mini patient meeting every time we get together. I’ve been so impressed with them as they’ve generously given of themselves to further the PC cause. I think all of us, even those of us who are a little older, really want life to be better for all PCers. And if that means being on display for other doctors to see, hey, that’s okay with us.

But alas, I usually cannot stand without pain. And on those few times when I can stand without pain, I have about one minute – if I’m lucky – before the pain starts in the sores on my feet and then radiates up my legs because of the intensity. So I stay on chairs in the kitchen. And I’m still pretty fast. But sometimes, I like to dream of how much FASTER I could get things done if I were on my feet. Ah, but maybe having PC is a good way to force me to slow down. When I was a teenager, my mom often said something to the effect that it was a good thing I had bad feet or else she and my dad would never be able to keep me down.

But still, though I don’t dream of running marathons (I don’t need to be THAT fast), I do think of how fun it would be to simply WALK. You know, walk around the grocery store - quickly, run errands – quickly, even take walks – quickly. I wouldn’t want to take a leisurely stroll. When I imagine myself walking without pain, I see myself walking quickly. (Even on crutches, I hate to go slowly, though that’s not always a choice.)

And best of all, I live at the base of several beautiful canyons here in Utah. I would love to hike all those gorgeous trails. That’s my dream – to hike, to feel my legs pump and climb on trails surrounded by beautiful nature. And not slowly hiking, but ever pressing forward on those trails, to see what’s around the next tree, boulder, or up the next incline. And yes, quickly. When I think of being cured, I think of life without pain, but even more so, I think of doing things quickly. Yeah, maybe it is a good thing I have bad feet.

Sam was like Nate through third grade – wanting people to know and understand PC. But this year, starting in fourth grade, Sam wanted his teacher to know about PC, but he did not want the class to hear about it. He figured most kids his age knew by now anyway and he especially didn't want to call any extra attention to himself. He said he just wanted to be a normal kid.

So that's what we planned on with the boys and that's what happened. Before school started, Dave and I met their teachers at the first parent-child-teacher conference. We gave the teachers a copy of PC Project's brochure so they could better understand PC and access the web site if they wanted.

Even though Sam didn't want special attention given to him, when we mentioned to his teacher that heat bothers him, she said he was more than welcome, when the cold weather came, to have sandals at school and wear them in the classroom. It's been great because recently, I finally forced Sam to wear real shoes or boots – not his sandals – when the snow came and the temperature was in the 30's. He'd protested so long because he said his feet get too hot in shoes. But knowing we had that option made it fine. It's a simple solution I'd never thought of – even though I wore sandals in the snow as a teenager. How nice Sam has a teacher who was already looking out for his needs before they even became needs.

Sam's teacher has even emailed me occasionally to make sure I let her know if there's ever any teasing going on. At the first of the year, some 6 th grade girls came up to him several times at recess and said some pretty cruel things about his nails. His teacher just happened to be there. She told Sam to go and play, so Sam doesn't know what she said, but they never bothered him again. She's also helped him with knowing what to say and how to act around other children. A while ago I asked Sam if he ever gets teased by kids in his class. He adamantly said, “No – that would never happen in my class.” Somehow this incredible teacher has made him feels safe. In addition, he's making real friends in her class because she has fostered such a great atmosphere of respect.

It's interesting to me that as Sam gets older, he wants to draw less and less attention to himself and his PC. He sings in a children's choir. Someone must have told the director about Sam, because one day the director stopped to tell me he'd heard about Sam's feet. He asked if Sam was okay to stand for concerts. I said yes. The director then said if the choir was ever standing in practice and Sam needed to sit, he was welcome to do so. That was nice to know since it's quite a serious and well-disciplined choir.

Well, today at school, Sam went on a field trip that involved a lot of walking. He came home in a ton of pain. An hour later, when I dropped him off for choir practice, I told Sam what his director had said about sitting. Sam got out of the car, scoffing that there was no way he would sit, it would be too embarrassing, and everyone would think he was looking for special privileges. Okay honey, stand if you want J .

Even though I have PC, my children are so individual in their personalities and in the way they handle situations. I've really appreciated the advice and comments I've received from other people with PC, as well as parents with PC children. I'm no parenting expert and I'm grateful for all the help I can get. That's why I'm happy to educate teachers who are also willing to help out with PC issues.

Most PCers (including me) seem to hurt more when it's hot. As a result, many Pcers I've met prefer sandals. But I've yet to find a pair of sandals that give my own feet the comfort and support those particular ankle boot type shoes do. So I wear them all year long, and if need be, I take them off while I'm sitting to air out my feet, so the pain doesn't get too intense. But for standing and walking (even with crutches), nothing beats those heavenly shoes. And heaven must have been smiling on me, because thankfully, I was able to take those chewed-up shoes to a shoe repair shop and they were fixed as good as new, giving me the same comfort and support as before my darling dog took them to her teeth.

Now those shoes are three years old and getting quite worn out. I've dreaded finding a replacement pair. How many pairs will I end up buying to add to my collection of shoes that felt good in the store, but hurt terribly after a few times of wearing them? Finding the right shoes is so tricky.

Thanksgiving day I hit the jackpot. While skimming through the after-Thanksgiving sales in the newspaper, I saw my favorite shoe/boots in an ad, labeled with a different brand name, but they looked just the same. The next day I went to the shop to see if they really were the same. The salesman must have thought I was crazy as I tried on shoes that looked exactly like the ones I had just taken off. And then crazier when I asked if he had another pair just like them in the same size. The shoes were 60% off that day and I happily bought both pairs. They are now waiting in their boxes on a high shelf in my closet, out of the reach of my dog, waiting for my current pair to fall apart. And if you see me 10 years from now and I'm still wearing the same kind of shoes you saw me in this year, don't worry about my lack of current fashion because frankly, I'll take my comfy shoes over style any day.

A neighbor reported that her boys knew the names of all those bullies and were going to report them. She also said the bullies had threatened Sam and Nate, saying if my boys ever touched them (the bullies) with their nails, they would beat up Sam and Nate.

Note: It's interesting how little my boys will tell me about being picked on or bullied. I'm grateful I'm able to be home each day when they walk through the door. I often ask each of my kids the same two questions “What was the best part of your day?” and “What was the worst part of your day?” My advice to parents: Talk with your children because kids may be picked on and they just don't tell.

After talking with my neighbor, I was angry. No more did I think this was something my little boys had to put up with. If kids spit on a child with no arms or on a child because he had a different skin color would it be tolerated? And honestly, I was afraid for my boys. And mad. There was a momma bear in me I hadn't known existed up until that point.

Fortunately, I'm married to a calm, wonderful man who reminded me that we didn't want those kids to be our boys' enemies. After carefully talking it over, we decided to go to the bus stop where the spitters got on for a PC public relations campaign. That bus stop was far from our own stop so we didn't know these kids. But the next morning, Dave, Sam, Nate and Spencer and I all went to their bus stop with smiling faces and introduced ourselves to the children waiting there. We told them our names and then I explained very simply about MY nails, how they were just like theirs except the nails grow up, instead of flat, and how they weren't contagious. And of course, I then told them how Sam and Nate's nails were the same as mine and it was no big deal – just a bit different. A few parents were waiting with their young children and we told them what we were doing. We were happy for their support in our public relations campaign.

As it turned out, about 20 or more children got on the bus at that location. So Dave and I divided up as kids continued to arrive, giving our spiel over and over. Many children heard it several times. Some sweet children were even showing us oddities about their own nails.

But because there was that momma bear in me, I had to say quite sweetly how awful it was that some kids were making fun of Sam and Nate, even threatening them and spitting on them. “Can you believe it?” I asked in a shocked voice. I went on to say how bad I felt that their names had been turned in by some other kids and that they were probably going to be expelled from riding the bus.

Our PR campaign evoked three responses. First, some kids were penitent. One sorry boy even said, “I think I'm going to get kicked off the bus.” The second response we got was to be ignored by the main group of bullies (whom Sam and Nate discreetly pointed out to me). They clustered in a group and would not come near us. They knew who we were and would quickly glance over at us. Third, and most importantly, we enlisted the compassion and help of a whole new group of kids, including some very nice BIG boys, who now understood a little more about PC. Never again would our boys have a problem on that bus.

We kept it upbeat, positive and friendly. We felt very good about what happened at the bus stop. For that second group of boys, I'm not sure what they were thinking, but I wasn't sure trying to teach them empathy would be enough. And they did do something very wrong. When the bus came, we waved hello to the driver. She recognized us with Sam and Nate and said she'd received the names of the persecutors from some other children (our neighbors). She was aware of the problem but was a substitute driver and didn't know how to stop it, but now that she had names of the bullies, she was turning them in.

We put our kids on the bus there and sent them off to school. Dave went to work and I went home and called the school to report what we'd done. The school said the names had indeed been turned in by the bus driver, but the principal was out for meetings that day so they weren't sure what could be done. I replied that I didn't think the bus was safe yet for my boys to ride home on and said I'd be at the school 20 minutes before school let out to follow up.

I arrived at the appointed time, and the person who takes the principal's place when she's gone was there to meet me. She told me she'd called in the boys one by one and each was expelled from the bus until his parents had signed his slip. I humbly and gratefully thanked her for her help.

I waited until school got out. Sam and Nate were very excited to see me and wanted a ride home. But I said to them, “You HAVE to get on that bus and ride it home – this day more than any other day.” So I waved and said hello to all our new friends that we'd made that morning, many who continued to seek me out to talk with or say hello to for the rest of the school year.

I know I can't intervene for my kids on everything that goes badly in their lives. I can't and I won't. Believe me Sam and Nate both have dealt with bullies many times all on their own. But in this case it was time to step in. (Especially when 5 and 7 year olds are being ganged up by 10 and 11 year olds.) Hopefully we all learned something that day about solving problems and making new friends. So for all you who wanted it, that's the end of the story – and with a very happy ending!

I don't quite know how to explain what it means to meet people for the first time who know exactly what it's like to have this strange disease. I've known people without PC for years who still don't quite understand what I've got. Some people think it's worse than it is, while others can't quite comprehend why my feet hurt. Thus, to meet someone who knows exactly what I'm going through, well, it's hard to explain. We don't even have to say a word. We just seem to have an instant bond.

Last Thursday, I met for the first time a young woman with PC. She's a lovely person, a student here in Salt Lake City, who found PC Project through the website. We met in front of her apartment. I can honestly say I loved her and connected with her from that first moment. We hugged and the bond was there. You don't just do that with other people. You don't go meet someone at a swimming pool and hug because you both like to swim. You don't go meet the person who's helping you with your child's classroom Halloween party and hug because you both love children. But it somehow happens with PCers.

Meeting someone else with PC brings that incredible bond because I know THEY know what its like – and no one else really does, no matter how well you explain it or describe it. But my fellow PCers – they know.

That's what was so amazing about meeting PCers in both Kansas City and Dundee. I still feel so connected to them and I genuinely care about them, even after a relatively short meeting time. And it's interesting, once we meet, it's not enough to just know they understand. Finally, it's a chance to show my feet and nails to others and to compare and see similarities and differences. And even though there are some differences between us, that's okay too, because at least they still know, better than anyone else in the world, what it's like.

The first night I was in Dundee for the patient meeting, I met everyone and had this incredible experience of sharing and talking, just like in Kansas City. Afterwards, I went back to the hotel room I shared with Mary (you know, my mother-in-law, the Mary we all know and love) and we were chatting, tired, but on a happy high. And suddenly, I just felt overwhelmed with emotion. Maybe it was just jet lag, but it felt incredible to be with people who understood – not pitied, mind you, just understood. I also felt just as emotional about the fact that scientists and doctors who have dedicated their careers to skin diseases were there to host and be part of the patient meetings. To have scientists and doctors who were genuinely interested in understanding, well, that doesn't happen every day in a PCer's world and the only way they'll ever really know how much that meant to me is to have a heart transplant – from me!

All I can say is thank you to the many people – PCers, scientists, and others – who have sacrificed so much and have made these connections possible. You have touched my life, have given me great hope in the goodness of mankind, and have made my world that much happier. What marvelous people you are!

First, I explain to Sam's and Nate's teachers at the parent/teacher conference before the first day of class what PC is and how it affects them. This year I'm excited to hand them each a copy of PC Project's current brochure and website address. (Just send an email to request as many copies as you'd like.) PC is so tricky because sometimes my kids can participate in activities, but when their feet are infected or extra blistery, they cannot. Near the end of the last school year, Nate had a huge blister that flared up at school and his teacher saw his PC feet for the first time. When I came to the school, she met me in tears. This teacher was always understanding, but up until that time had never quite realized how much pain he was in. It's my opinion that educating others can go a long way in helping them feel comfortable about something they don't understand.

Second, I will make a plan with the teacher about whether or not to officially tell the other students about PC and how. I will wait to talk to both my boys and their teachers to see how we should handle this. For Sam and Nate, something so formal didn't seem to be necessary in Kindergarten and 1st Grade. But since 2nd grade, (Sam is starting 4 th ) Sam's peers have been much more aware of his nails and the fact that walking is sometimes hard for him. I've especially found it very important to communicate to other children that PC is NOT CONTAGIOUS. As much as I'd like to live inconspicuously, the reality is, other children are noticing and we have a choice to be offensive or defensive. We're finding the offensive can alleviate teasing, cruel words and even physical hurting (But not always.).

At the first of the last school year, after meeting with Sam's teacher, she and Sam decided it best to tell the class about PC and why sometimes it hurts and is hard to walk and sometimes it isn't. I offered to come and explain, but Sam didn't want me there – he wanted to do it by himself. This teacher gathered the class on a big rug and started the discussion by explaining to the class about her bad knee – how sometimes it hurt and sometimes it didn't and sometimes she needed a knee brace and sometimes she didn't. Then she turned it to Sam and together they explained PC and how Sam's feet were like her knee. Because of our previous discussion, she was very knowledgeable and was able to help Sam articulate. Sam loved how the discussion went and the school year was the smoothest he's had thus far in regards to teasing.

Nate just finished 1 st grade and up until towards the end of the school year, other students weren't bothered by his nails and feet. Then at a dance festival, where all the kids took off their shoes and socks, other children saw his sores and suddenly some friends he had all year didn't want to play with him anymore. From then on, until summer vacation, Nate refused to wear sandals. Needless to say, this year, we may be much more pro-active in formally educating his peers.

Another thing I do is volunteer in their classrooms. This serves many purposes. It's fun to be involved and it keeps me in touch with the teachers. It helps me keep things in perspective too - PC isn't the worst thing that could be going on in a child's life. But the biggest advantage to volunteering at school is I meet the kids in the class. They see me with crutches and always know whose mom I am. They say, “Hi!” and smile at me because kids are basically good and bask in any attention even a boring adult like me will give them. And when I'm helping them read or whatever, they see my nails and ask me about them because I'm friendly and it's okay. I explain to them easily and say “just like Sam's” or “the same as Nate's” and all of a sudden, thick nails aren't so bad. It's a good little PR campaign to help my boys out as they learn to be strong enough socially to answer the questions or handle rude comments themselves. My boys listen to how I respond and hopefully they're learning.

We've also role played at home how to answer questions, especially obnoxious questions. I'm trying to teach them to act as if it's not a big deal, because when they act like it is, or act embarrassed, it only makes the situation worse. I did observe Nate answer a question using the exact answer we role-played. He even did the shoulder shrug when he replied at the end of his simple nail explanation, “No big deal.” And the child he was talking to shrugged as well because really it is no big deal if my nails look different than yours. But obviously, that doesn't work every time as Nate and Sam well know. But we just try to educate the kids and it can help a lot.

The last thing I do to help prepare my kids for a successful school year is something I would do anyways because it's who I am. I am very involved in my neighborhood, community and church. As a result, many parents and children know me and my family and hopefully think we're okay. Because we go with others to neighborhood barbeques, community plays, church functions, etc., they understand PC and how it affects our lives. Our kids play together and then they go to school together. And these great parents are teaching their kids about accepting other kids with differences, namely my kids.

Will Sam and Nate have a perfect school year? No, there will always be kids that pick on them, call them names or say other means things. They've already expressed some trepidation about certain children that target them. I know I can't protect my kids from all of life's problems, but like all parents, I will do my best to guide them as they learn the tough lessons of life. Most of all, my boys hopefully will always know that home is a safe place where they can get empathy - but not pity - and lots and lots of love.

As a parent, I've still got much to learn. If you have experiences you can share, or tips or ideas that you think could help us parents of PC children, please write me or post it on the Message Board so we all can learn.

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• Another advant