Sharing my story for Rare Disease Day

I knew I had PC since I was a child because my dad was a spontaneous case and was diagnosed before I was. As a child, it was still hard when people noticed my nails and asked what was wrong with them. It made me feel insecure about my appearance. My son also experiences this issue, but with PC Project’s valuable information and support, we are better prepared to explain it to schools, doctors, etc., than my dad’s generation was.

PC feels like electroshock in my feet when I walk too much, especially when I rest them. Sometimes I can push through the pain while walking and make progress toward my goals because my brain eventually gets used to the chronic pain throughout the day, but I always pay for it once I sit down. It’s a wave of intense throbbing and pain that is hard to articulate. I want my loved ones to understand my condition better so they can empathize. They do understand I have pain, but sometimes I wish people could experience a moment in a PC patient’s life to better understand how it feels day in and day out.

I also wish people would not look at me, a younger woman who doesn’t “look” like she has a disability, as though they assume my handicapped placard, my wheelchair, or the electric shopping cart I’m using means I’m just being lazy. I like to look put together, too, so it’s even harder for people to see past makeup and a cute outfit to show compassion instead of judgmental looks. If I’m limping due to the pain that day, I get fewer looks, of course. But without a cast on my foot or something visibly wrong with me, some strangers very much assume I am taking advantage of accommodations. I have gotten comments from passing people who think they know me and assume I couldn’t possibly have a handicap since nothing is obviously wrong with me in plain sight. This is the most frustrating part: feeling like you need to explain your private, personal health issues to someone just because they doubt you are being honest.

Living with PC is a lot harder than just dealing with the looks and comments people have, though. Of course, having others (even doctors) who do not understand PC and try to give you advice and ways to fix it as though they have the cure can be quite frustrating. This is something that we have had all our lives, and people want to tell me there is a cure without even knowing the name or understanding the nature of the disorder. But worse than dealing with others is the pain that we deal with on a day-to-day basis.

My father had a very bad case of PC K17. Not only did my father deal with calluses and blisters on his feet, and even blisters under calluses, but he also had the added pain of cysts and boils on his whole body. He had shown me that despite people’s negative reactions to the cysts, the nails, the blisters on his feet, and the sores that never heal, he remained a humorous, kind, and loving person until he died, and his legacy gives me the courage to remain positive and find joy in the world despite our diagnosis.

Six people in my family, including me, have PC K-17.  I still get sores under my arms and in my groin that open and close, but never really heal. It’s hard to wear underwear sometimes, and it’s embarrassing to have to raise your arms for something and have people see the sores or the scars there, too. There is no cure, no relief for my family and me. It’s true, we don’t die from PC, but the quality of our life is affected in ways that many people do not understand. Maybe it’s too late for me to have a cure, but surely there’s got to be something that can be done for the unborn. Maybe that’s where we start: to help future children. But it would be nice to find some relief for those already suffering, too.

If you want to help PC patients, please donate to our cause. If you want to do research on this rare disorder, please get involved. We need all the help we can get to figure out a cure for everyone affected.