Jan’s Corner 2004

Day-to-Day Care

January 2004

This is Jan’s response to a request to describe for a dermatologist the basic day-to-day care for herself and her boys.

This is my own personal approach and should not be considered as ‘advice’ or medical instruction. It is just what I personally do for myself and family —

To care for the sores on my feet, I use three main tools:

• Large nail clippers: I cut pieces of sores that are awkward or dangle and hard to get to. I also use the edge to scrape at soft sores that are too tender to touch with a pumice stone or too bloody to touch with a blade.
• Double-edged razor blades or a scalpel is my favorite choice. A doctor’s scalpel with interchangeable blades works well for whittling down the callused sores. I prefer the razor blades because they bend and you can slice more sore at a time. Don’t just start whacking – be careful not to go too deep too soon. You need to whittle at the sores. I regularly make myself bleed because I’m hurrying. The goal is to cut the sores down as much as possible without reaching live skin. I trim my boy’s sores with the blades. I usually have them bathe first so the sores are soft. With me however, I sometimes like them soft, but sometimes I like them hard. I don’t usually soak my sores first, because if they’re too mushy, they hurt. (My boy’s sores are mostly hard calluses, while I have some that are really mushy right now and that makes it very difficult for them to be sliced.) Also, one blade per trimming. They get dull really fast and to cut with dull blades is awful and not nearly as safe.
• Pumice stone. This is so handy when sores are really dry. Take a stone to the dry sores and the stuff will sluff off easily. Many times I trim with the blades then use the pumice stone to smooth over the rough edges. And not all stones are created equal. You don’t want to use a fancy, smooth one. You want the roughest, jaggedy one you can find. I sometimes buy several to get the perfect one. But nothing feels better than taking that stone to my tired feet. Now, if my feet are sore after a long day with shoes, there’s no way I’ll touch them with the stone. But if they’re not too bad and VERY DRY, the stone is great.

I do have a little power tool sander, but I don’t use it much because, like I said, every sore is different.

Notice, the tools I use depend on the softness of the sores and the condition of the sores. My sores vary even on each foot. In one trimming session, I typically use all three tools. I have a special trimming box for my tools and a big piece of slick card board to catch the shaved sores which are thrown away. That keeps things tidy. I also wash my hands WELL before and after. When I finish trimming, I always soak my feet in water and wash them with a good soap. I use Dial. I’ve also used Phisoderm (a prescription) soaps. Then I dry my sores and lather them with Vaseline.

As a doctor, you might tell your patient to always use rubbing alcohol on the blades or between cuts as a precaution against infections. Like I said, I just use a fresh blade for each trimming session because I do it so much.

I know when I let my sores grow too big, they hurt WAY more. Even my boys come to me when their sores need trimming. They know it hurts more. Also, my feet don’t get infected nearly as much when they are trimmed. If the sores get too big, they get a whitish layer underneath them that will even fill with pus at times. And even if they don’t, that whitish stuff is much more tender and sore. My feet also feel hotter, if that makes sense, when the sores are too thick. It’s just an incredibly uncomfortable feeling, besides the fact that I feel like I’m walking on rocks. Also, a white film of skin will tend to spread out from the yellowish sore and again, fill with pus.

I trim my boys nails after they take long baths and with the same combination of large clippers and razor blades. Keeping the nails trimmed and groomed seems to help avoid infections that appear to occur more often if the nails get too large

Trimming sores does take practice I started young with a scalpel and I may have my boys do the same. I think you probably could’ve figured this all out on your own. I hope I’m not insulting your intelligence.

CREAMS, OINTMENTS, ETC. I’ve had creams with acid prescribed to me before. I can’t remember a name of any, but they’ve been more a bother to me because sometimes, I don’t want my feet that soft, because the creams make them more tender. Also, I still have to get the soft sores down. One more thing — when pregnant, my sores look like bloody oatmeal. One well meaning doctore gave me a cream I put on my sores. I thought I’d die, my feet burned so badly. I finally called my uncle, who is a dermatologist in San Francisco and read the prescription to him. It had over 40% acid in it. The consistency was like Vaseline. I stuck that stuff into my mushy open sores and my feet burned for another day even though I tried to continually soak it out. I’ve yet to experience anything like that kind of pain.

I only bring it up because a lot of doctors have prescribed creams with a little acid for me and they’ve been ok. I’m just saying, it depends on the state of the sores. Someone might find it useful. But again, I’m all for the good old fashioned tools.

I do like Vaseline A LOT. I put it on each morning before I put on socks. My feet feel much better in my shoes. I also do it at night after I’ve trimmed my feet. I think it’s just a balance between having sores that are too mushy or too dry. If they’re too dry, they hurt or sore crack. Foot care is so much figuring out what’s best for your feet at different times of the day, month, etc.

Also Bactriban and Neosporin types have been helpful to put onto open sores. And if pain is really bad on an open sore Americane is great. It’s a hemorrhoid ointment, but I went through tubes and tubes during pregnancies because my sores were all open and mushy and it numbed the pain.

NAIL CARE FOR AN INFECTED NAIL

Recently one of my boys had an infected nail. That means the nail was filled with pus, the surrounding skin was red, and the nail was extremely painful. When a PC nail is infected, it usually pulsates or throbs so it’s hard to ignore. Of course, the fastest way to pain relief and healing is to relieve the nail of the pus. That used to be a traumatic experience, but now we’ve found what we think is the best way to get that pus out as painlessly as possible. If you’ve found something better, please let us know!

First, we soak the nail so it’s good and soft. In the case of a young child, that’s easily done with a long bath. While the nail is still soft, it can be penetrated with a double edged razor blade and large nail clippers if necessary. Because of the pressure involved in cutting the nail with the large clippers, we use them only if the nail has an extra tough edge. You use the clippers to get past those edges so you can work with the razor blade. But if you don’t need the clippers, stick only with the razor blade. It’s our favorite tool, and we like the double edged blades because of their flexibility. With the blade, I gently slice off parts of the soft nail until the pus is reached. Once the pus runs free, the nail needs to be washed with good soap and soaked again in warm water to continue to draw out remaining pus. Sometimes Neosporin and a band aid will help my children feel better about the whole process. Often, just having the pus out and the intense pressure relieved makes the pain lessen almost immediately.

As you get older, you react more quickly. The moment I feel that ‘thumping sensation,” I head for my tools and take care of it. It’s harder with young kids as they may ignore it longer.

Pain vs. “Unsightly Nails”

5 January 2004

Note: as we work on the PC Project goals which include a Registry and a questionnaire to find information which will be useful to researchers, we’ve had some discussion as to what the major problems are for PC patients. Here is Jan’s informal response. We’d like to hear your informal comments as well – please send us your thoughts on this to info@pachyonychia.org. PC Project Webmaster.

PC. As to the pain verses ‘unsightly nail’ issue, I’m not absolutely certain, but I’ve always thought there are degrees of severity to PC. In other words, side effects such as sores on the feet may not be as bad or even not there at all for some with PC. Many years ago I was told by a doctor that my case was one of the most severe. I can’t remember which Dr. and have no documentation – it’s just been in the back of my head. If that’s true, it really could mean the nails are the most disturbing thing. I’ve corresponded with a woman who had the nails removed — a painful procedure which I’ve opted not to do. I also heard from a mom whos child’s PC nail got caught in the car air vent because the nails were so long. It surprised me that someone could let that become such a problem as we clip and trim daily. I guess the point is, there are people out there with nail issues and they may be more prominent particularly if side effects such as painfully sore feet aren’t severe. As a teenager and younger, I hated the looks of my nails, as do my young boys do now. For example, for Nate (age 6) right now, the nails are a big consideration. But when his feet start hurting like Sam’s (age 8), the nails will probably take back burner. Also, as a more confident adult and in a secure relationship with a man who loves me, t he nails are so secondary, I hardly notice them. But I can see people perhaps in a different situation really struggling over the nails. I continually hid my nails throughout the dating scene and in social situations. And I still sometimes get annoyed when strangers in public places loudly ask me what’s wrong with my nails – like a checker with a long line of people behind me who stopped everything to inquire about my nails. What are your thoughts?

People Who Care

10 February 2004

Tomorrow, the first guests for the PC Symposium will be arriving here in Utah. How I wish you all with PC could come and listen to the presentations and discussions. I promise we’ll keep you informed on the website about what happens. As a person with PC, I understand how anxious you are for ANY information about progress towards a cure. Right now, on the eve of the symposium, I’m very thankful now for the people in my life who are sacrificing so much time, energy, money and even sleep to make this symposium a reality.

It makes me reflect on my life as a single person with PC – back when I felt like I needed to hide my nails and tell stories – or should I say “tales” – about why I sometimes used crutches. Who’d have thought then that I’d marry into a family that would not only accept me the way I am, but work so actively to find a way to relieve my pain.

Sometimes I’ve felt like because PC is so rare, people may be interested in it in passing, but no one besides the family I was raised in really cares. After all, everyone has problems of some kind or another. So for me to now be surrounded by people who cheer me on, don’t pity me, and who are working so actively to help the PC Project cause, well it is absolutely humbling and overwhelming. I am extremely blessed.

I share this because I want all of you who read this “Corner” who have PC to know that there are people out there who not only care about me – but they care about you. People involved in this project who don’t have PC weep when they read your e-mails. They are also uplifted and amazed by you. We may be strangers in that we haven’t met, but that doesn’t mean we don’t care about each other and want each other, even perfect strangers, to have better lives. We’re all in the same human family and we’re all here to help one another, including those with PC.

“So…did they find a cure?…”

21 February 2004

I recently had the great opportunity of meeting the most amazing people. I just attended the first PC Symposium ever. I say “first” because there will be more. I wish everyone interested in PC could have been there to listen to incredible minds talk about us – or at least our genes and our skin. I confess, I was a bit nervous to meet doctors who I know think on a way higher level than me. (I’m more on a “What shall I fix for dinner tonight?” level.) But, I soon realized that these great people are just that – people – albeit very smart people, but very GOOD people. My only hope is that they had as good a time as I did.

“So…did they find a cure?…”

As soon as I saw my children after the big weekend, Nate asked, “So did they find a cure for Pachyonychia?” Sam was a little more realistic and asked if we made some steps towards finding the cure. I was happy to report to my boys – and to you – that the first steps have been made. I’m absolutely convinced we will one day reach our goal.. We are committed for the long haul. There’s a ‘summary’ of what’s planned on the Events page under 2004 Symposium.

My one worry, well, not worry, just a thought, is that I didn’t look “pained” enough to truly represent what PC patients actually go through. We from the PC Project kind of laughed about it afterwards that maybe I seemed too ‘okay.’ After the first night, my feet were hurting so badly, I upped some pain medication so I could enjoy the Symposium. You know if your feet are hurting to a certain point, you don’t care much about other things.

Needless to say, if any doctor ever reads this, you can rest assured I paid dearly come Sunday night and Monday. The pain medication doesn’t stop the damage you do when you walk and when the medication wears off — the damage remains. Don’t feel badly for me – I’m smiling while writing this. I think I’m basically a happy person, but that doesn’t mean I don’t wish to ski with you all someday! And that goes for all the other PC patients out there.

Doctor Visits

3 March 2004

After setting up a new home in a new town after I married Dave, I went in search of a local dermatologist because, well, that’s what we PC patients need — a good dermatologist. Besides, I liked to go to one every couple of years, just to see if there was anything new in the treatment or cure department. I always thought I d hate to not be cured simply because I didn’t make a doctor’s appointment.

Anyway, I made an appointment with my assigned HMO dermatologist. At his office, I introduced myself and showed him my hands and feet to see if there was anything he might have to offer by way of treatment or care. He excused himself from the room for quite some time. Finally, he came back into the examining room with a big thick medical book. He pointed to the open page and said “You have Pachyonychia congenita.”

I hope you’re smiling while reading this. I thought it was very amusing that a doctor assumed I’d lived 25 years and did not know why my nails looked the way they did or why I walked with crutches. Needless to say, I graciously thanked him for the information and never made a return appointment.

Now, don’t get me wrong. I have ZERO bad feelings for this good doctor who wanted to help. It’s just an example of how rare PC is and also, how important it is to find a good dermatologist who cares about you as a patient and is familiar with PC. I would even go so far as to say it doesn’t even matter if the doctor doesn’t know about PC at first as long as he or she is willing to be educated and understand what you’re dealing with.

I know from many of you who have contacted us, that others have had similar humorous and even some sad or unfortunate experiences with different doctors. We hope our website (and our brochure) can help with communication with doctors as well as with others. We are grateful that already doctors have found our website and contacted PC Project as a resource and referral for them to get help for their patients. Yes, our goal is THE CURE, but in the meantime, we want to make life as pleasant as possible along the way for both PC patients and the excellent doctors who work with PC patients.

Big Brother

19 March 2004

One of the most traumatic days of my life as a mother was when my friend and neighbor called to tell me about an incident on the school bus. Sam and Nate had already come home from school that day and had reported nothing unusual. I’m a mom who fortunately is able to be at home when my kids come home, and each day we go through the routine of talking about school. So I was surprised when my neighbor reported that her twin boys, who were in the oldest grade on the bus, told her that a bunch of kids who got off at a different stop, all paused on their way off the bus to spit in the faces of my sons, Sam and Nate, because of their nails. Sam was 7, Nate was 5. My friend was concerned not only for my boys, but also for hers, because she said her boys were so mad they were planning to pound those kids the next day. We worked it out another way, but my point in sharing this now is this: I’m grateful for those “big brothers” Sam and Nate had on their bus ride home. It made me remember my own ‘big brother.’

Though I was often asked, perhaps sometimes rudely, about my nails, I never as I child received the ridicule and persecution my boys deal with today. Has the world gotten meaner or was it because of my big brother? Greg was only a year ahead of me in school and everyone liked Greg. They called him “Smiley” from grade school through college. He played basketball. The girls liked him. But mostly he was just a nice guy. In junior high, we rode the bus. At the end of the day, when the bus dropped us off, we had only a block to walk home if we cut through a field. But a person with PC starts a day fresh and ends it sore. I don’t ever remember asking Greg to carry me home. But many, many times, he would take our backpacks, my violin, and his trumpet and run them home. Then he would run back and piggyback me home. Lot’s of kids got on and off at that bus stop. But looking back, I don’t think anyone would’ve ever dared say anything mean to Greg’s shy, funny looking sister. The year he went to high school as a 10 th grader was the year 9 th graders were moved to high school as well, so went to high school at the same time. For the next 3 years, we drove to and from school in an old green truck. I didn’t hang with him at school like a pesky little sister, but my claim to fame was that Greg was my brother and because he was respected, I’ve do doubt some of that respect trickled down to benefit me. Yes, I had a senior year without him, but by then I was gaining some of my own confidence.

I am so grateful for a ‘big brother’ who was never embarrassed to be with me. He certainly made the road easier for me. Now, as my kids deal with the cruelties of other children, I say ‘Thanks for good friends and neighbors who are courageous enough to step in and play that part.’

Spring Break

8 April 2004

The boys are home, so there’s a lot of family time this week. Over the past few weeks, I prepared the patient-to-patient tips (posted on the For Patients section of this website). It was great to read all of the emails sent to PC Project and sent to me. I also went through all the information on the Patient Message Board. We’re discussing many of these comments with various physicians. I’ve been given the assignment to test a couple of things and will report what I find. While the scientists search for the real cure, it will be great if we can cooperate together and find suggestions to help one another lessen the effects of PC. Have a wonderful Easter!

Infected Nails

7 May 2004

Today, I’m typing with only half of my fingers. If my corner is to describe “Living with PC” then today is the day to tell you something I dread about PC life: Infected nails! I rarely get them. But lately, I’ve had a slew of them. A week ago the nail and surrounding skin on my pinky finger swelled up like a big red balloon. A thick red line ran from the nail to the end of my finger. I soaked my finger in warm water until the nail was very soft. Then I used a clean, sharp razor blade and gently cut through the nail just a little bit to let out the thick, yellow pus. Then I soaked the finger again to get out any more pus. Because the nail bed was exposed, I applied antibiotic ointment and a band-aid for protection. Pus has continued to ooze out of the nail for the past week, but the red streak did go away. I played the odds that the nail would heal on its own without an antibiotic. If I ever see a red streak on one of my boys, it’s off to the doctor we go – that day .

I’ve had another infection on my thumb nail that I was able to lance as well, but it didn’t hurt as much and now it’s healing. However, I woke up at 5:30 this morning to the throb of another swollen nail on the same hand. As usual, the pain was so bad I couldn’t sleep. Once again, I soaked, lanced, and bandaged the nail. But the pain is so intense, I can hardly think about anything else. This nail also has a red streak traveling from it up my finger. I also have three nails on the other hand that have become red and swollen today and some of the blisters on my feet have been infected as well. It’s like infection is raging through my body.

This time I’m not playing the odds that the infections will heal on their own. This kind of pain is frustrating. Something as simple as putting on socks is tedious with so many nails affected. So, soon I’ll be picking up a prescription for an oral antibiotic. Fortunately for me, I have a good relationship with my dermatologist. He trusts that I will only ask for a prescription when I truly need one. And he can trust me. The last thing I want to do is overuse antibiotics – especially since I rely on them so much when infections get this bad. I’m grateful for my doctor, because when I really need an antibiotic, I’m typically in a lot of pain and going through the motions of a doctor’s visit is only more difficult. But if he ever feels like he needs to see me, he’ll let me know and I’m happy to come on in to get his medical care.

And today I need it the medicine. I’m already dreading the three nails that are already starting to throb but don’t seem to have pus in them yet. The nail on my pinky finger that’s healing is still oozing pus, and the one I lanced this morning, well, let’s just say when something hurts this much, it’s hard to focus much on anything else. My boys are coming home from school soon. We’ll go to piano lessons, the pharmacy, and then the annual school carnival. At the carnival, while my kids go from activity to activity, I plan to find a spot on the grass to sit because my feet are sore from the heat of the day and yes, my fingers hurt so badly I can barely stand to touch anything with them. I’ve no doubt, the many parents I know will come and sit with me and we’ll chit chat about kids, school and summer plans. And that will be good, because they will have no idea that they are keeping my mind off my pounding fingers. I’ll be happy for any diversions while I wait for the antibiotic to fight off the infections so my nails can get back to “normal”.

Genetic Testing

26 May 2004

I recently had the privilege of being genetically tested for Pachyonychia Congenita. I am one of the fortunate ones who was diagnosed correctly with PC as an infant. I’ve heard of many PC patients who for years went undiagnosed or misdiagnosed. However, since we started the PC Project, there was a little doubt that nagged in the back of my head which said, “What if it’s not really PC?” After all, there are other disorders that mimic or are similar to PC. And there I was, and my family too, committing time and money to begin research on PC and what if I really didn’t have PC at all?

Therefore, it was a privilege to be tested. The testing involved a simple withdrawal of blood at a nearby hospital. Once those first results came back, I was given a ‘cheek swab’ kit. which was easy to do in my own home. The results were explained to me personally so I could understand them.

Frankly, it felt great to confirm exactly what I have. I say that because whatever the diagnosis was, it would not have changed the fact that I have thick nails and sore feet. At least now I knew that we at PC Project are focusing on the right target. I also very much like knowing which specific gene is mutated so that the research can focus exactly on that specific problem. I hope you all have this opportunity and I am grateful to PC project for making this possible for me.

Positive Aspects of PC

8 July 2004

So often we hear about the agony of having PC. I will be the first in line to tell you how it hurts, how it’s limiting, and how I long to run, run, run. But, since I write to depict life as it really is with PC, to be fair, I have to list some of the positive aspects of having PC. Here’s a few:

• I don’t understand the meaning of a hang nail.
• I have very flexible legs from putting my feet close to my face to trim sores for so many years.
• Right as I entered puberty, I took the drug Accutane to see if it would help my PC (it didn’t) — however, my complexion was perfectly free of acne throughout my teenage years.
• At Disney World I can go in a special ride line – and my family too. Of course, I figured that out in the evening after having been there all day. But no matter – we went on more rides in one hour than we had all day!
• Another advantage of having PC is after years feeling too proud, I finally applied for and received a sign to hang in my car which allows me to park in handicap parking places. Not only does it save my feet, I’m almost always guaranteed a great parking spot, especially at big events in sports, plays, concerts and so on. And everyone likes to ride in my car!

Another positive PC solution — I was able to waiver Junior High Physical Education (PE). That means I missed all those dreaded co-ed activities in standard gym issue at a time when I was full of whacky hormones and low self-confidence. Actually, I waved PE in High School too, but everyone tells me even that wasn’t as awful as Junior High PE. Instead, I was able to fit extra classes into my schedule that were fun and didn’t discourage me. Classes like arts, orchestra, Spanish, debate and journalism. I was even a DJ for my high school’s local radio station and the school’s sports editor. Instead of sitting in PE classes I couldn’t participate in and longed to be a part of, I was able to develop talents in other areas. I might add, I did take PE in college, but then options were greater and more suitable for someone with sore feet.

One of the happiest things that happened to me as a result of PC came during my college years. A music band I just love came to town. The concert was open seating so students lined up at the doors all day to get good seats. Because of work, I couldn’t go wait very early. I joined my buddies about an hour before the concert several hundred people from the door. And wouldn’t you know it? It just happened to be handicap awareness week. Never before had I received preferential treatment. But there I was with my crutches when an usher came and INSISTED I enter the concert early. I admit I was a little embarrassed. I hadn’t put in the time waiting that many others had. Then, of course, I had to take my crew of ecstatic friends with me. Not wanting to seem too greedy, I chose the middle of the SECOND row. We watched the band warm up, goof around, and finally, we enjoyed the most incredibly fun concert I’ve ever been to. I still smile thinking what a blast that was on the second row instead of on the back balcony. I’d never before wanted special treatment because of my PC, but I must confess, this time I was perfectly fine with it.

Having PC has taught me a lot of things. Perhaps that’s another entry for another day. For now, let’s just say it’s taught me to count my blessings. My feet hurt but I do have feet. I can always find someone with problems a whole lot worse than me. Probably the greatest advantage I enjoy from having PC is a sure knowledge that the people in my life are solid individuals, who have demonstrated by their actions that they are not superficial people who care about looks or what others may say. It’s a big positive to know my closest friends are not shallow, but terrific people with strong characters, who look at my heart, not at my beautiful nails and feet.

So friends, tell me your PC positives. Better yet, post them on the message board so we can all be uplifted. Just today, I had to have a cyst removed that had become inflamed and infected. Okay, I’m a wimp and it hurt. After the major pain subsided, I started laughing. The doctor asked what I was laughing about and I said, “Oh my life, I just have to laugh at this.” Don’t get me wrong, I’m not valiant. Remember I’m on crutches while so many of you are gritting out the walking on your own. But if life is tough, we can laugh or we can cry and it’s just so much more fun to laugh!

Back to School

17 August 2004

Today I registered my three boys for the new school year which starts in just over a week. Already I’m wondering what this year will be like for Sam and Nate, my boys with PC. There are a few things I do every school year that I hope will help my kids. 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.

The world has shrunk

25 September 2004

Did you know the world shrunk during the past three months? At least for me in did. In that time, I’ve met 27 with PC. That’s an amazing number considering the fact that before this year, the total I’d met was zero. If you add the people with PC that I’ve chatted with by email or phone in the past months, the total goes even higher.

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!

School Bus – Part Two – Resolving the Problem

1 November 2004

A while ago, I wrote about my 5 and 7 year old boys with PC getting spit on by a group of older boys while riding the school bus. Many of you commented on that incident and I promised to tell how we handled it.

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!

My Favorite Shoes

1 December 2004

The day I walked outside and found my shoes in the backyard, chewed up by my cute new puppy, I cried. Yes, that’s right. I actually shed tears over a pair of shoes. My favorite shoes. The perfect shoes – a type of ankle boot to be precise. I paid $70.00 for them. I would have paid $300.00 for them. When I bought them, if I would have known how wonderful they would feel on my feet, I would have bought 10 pairs. When I went places, I planned my outfits around those shoes. If the clothing didn’t look good with the shoes, I would find a different outfit to wear.

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.