Pachyonychia Congenita Project Europe (PC Project Europe)

#GivingTuesday to Pachyonychia Congenita (PC) Project Europe

Rising money for Pachyonychia Congenita research and patient support. This year Giving Tuesday is December 3, 2020. For each dollar donated, two dollars will be matched by a generous donor.
raised of £10,000 target
by 27 supporters
RCN SC046480


We want to stop the pain and suffering of PC patients everywhere. Here is a story of one PC patient:

"Hello. My name is Riley. Im 18-years-old and Im a senior in high school. I am a spontaneous mutation of PC K6a. Everything I do to manage my PC has to do with treating the pain in my feet. One thing I do is try to keep my feet in the balance between wet and dry. I leave my socks and my shoes on a lot to keep my feet from drying out. If my feet get too dry, they hurt more. The callouses get hard like rocks and they hurt super badly. They will crack, and they will bleed. The worst is when they have to stick to my socks. Ill have to put them in water, socks and all, in order to peel them off. So, I try to keep my feet not too dry. I regularly soak my feet in plan water. Soaking helps. It feels good and is very soothing. It also helps it not to itch. The itch is so bad, Ill scratch them until they bleed. I just cant seem to get the itch no matter how hard I scratch. To get the itch Ill have to rub my socks against my foot. It will rub my skin off because I dont have good nails for itching. Ill have to use my sock, the floor or even a backscratcher. I never take my socks off. Its more comfortable to have my socks and my shoes on. Still, its a hard balance when my feet are wet and blistery. They hurt when they are dry, and they hurt when they are wet. Its a lose-lose situation. The worst thing about PC are the blisters and callouses. For every symptom I have, the pain and itching is from the blisters and callouses. I have to pop the blisters all the time. Sometimes I just squeeze the blisters with my fingers and they will pop, or I use needles. My mom used to cut my callouses down with razor blades until I was about nine or ten. She used to cut so close to the skin, they would bleed. I used to have to put Band-Aids on my feet every single day on every single one of my callouses, but at some point, they changed from solid callouses to blisters, where I cant even touch them. My callouses dont grow up. They just stay flat. I used to be able to walk without shoes, but once my feet changed, I couldnt do that anymore. I was on the high school swim team my freshman, sophomore and junior year. Then they just hurt too bad to do it anymore Walking around the pool was sore, but also the water went against my callouses, so that hurt, too. Last year I started taking Tramadol. I take pain medicine each morning in order to go to school. The medicine takes the edge off. It also takes the throbbing and the sharp pain away. The hurt doesnt go away, but I can stand up more.

I am very social. I like to be out and about. The medicine makes me very tired, but the pain also makes me tired, so its hard to tell which one makes me the most tired. I use the medicine to help me get through school without crutches or a wheelchair, but I do use my wheelchair every time I go to the mall, grocery store, concerts, or on vacation. My family needs me to go on vacation with them, so we can use my wheelchair, and Im their line cutter. None of these thingsthe medicine, the soakingreally stop the pain or how my callouses grow. The only thing that helps stop the pain is to limit my walking. Staying off my feet is the only thing I can do. I made my school schedule so all my classes are close together. I dont eat in the lunchroom because its so far away. Ill bring my own lunch and eat in the library because its closer to where my classes are. I also have a handicap placard for my car and I use it at school every day. In junior high I walked a lot. I just cant do that anymore. The pain in my feet hurts my whole entire body. When I stand up or walk too long, I feel like Im going to pass out. I can only walk for about two minutes before my body starts to shut down. My legs will go all red and purple, and I will have to sit down. Ill even throw up sometimes because of the pain.

Another way I manage my PC is by crawling. When I come home from school at the end of the day, I usually park my car in the driveway, crawl from my car to my house because my feet hurt so badly. Inside my home Ill crawl 24/7. The only bad thing about crawling is it bruises my knees. I got to the point where my knees hurt so bad, I couldnt even bend them. If there was no cure for PC, I would at least want a treatment that would give me less pain. Everything starts with pain. I cant walk without my shoes because of the pain. I wouldnt crawl if I didnt have the pain. I would like a treatment that would let me walk a lot longer, like I wish I could take my dog on a walk. Id love to be able to walk at the mall or go to a concert. Id love to walk on the beach without dying. Id love to be able to have a typical teenage job and do what most people do my age. The most simple things to other people are the hardest thing in the world for me.

Since Im always in a good mood, people call me Smiley Riley. Theres no point in being a negative person because I have a disease that is so rare. My dad will always say, Youre going to win the lottery. For me, if theres a good treatment out there that would make it so I dont have as much pain that I could stand or walk, that would be like winning the lottery. "

About the charity

Pachyonychia Congenita (PC) is a ultra rare skin disorder characterized by painful calluses and blisters on the soles of the feet, thickened nails and cysts. PC Project Europe is a SCIO SC046480 that works with PC Project a 501(c)3 US public charity to better serve patients internationally.

Donation summary

Total raised
+ £702.50 Gift Aid
Online donations
Offline donations
Direct donations
Donations via fundraisers

* Charities pay a small fee for our service. Find out how much it is and what we do for it.