PC Community Stories
PCers have a great attitude
It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.' That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!
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My name is Coraline and I am almost one year old.
I was born a healthy, normal baby. At 3 days old, just before leaving the hospital, I had just a touch of jaundice, but it wasn’t severe enough to need any sort of treatment. My skin and nails turned a bit yellow, but nothing out of the ordinary for a newborn with jaundice, which cleared up over the next few days.
At 5 days old, my nails were a deep yellow, which was attributed to the jaundice and I also started having problems eating. I was exhibiting symptoms of thrush, also not uncommon in newborns and infants, which appears like white skin or cottage cheese on tongues. (This is a common misdiagnosis for babies born with Pachyonychia Congenita Type PC-K6a – but no one yet knew I had PC). I was prescribed Nystatin, which is used to treat thrush in newborns. Although uncommon, thrush can be a cause for discomfort and feeding problems.
Over the course of my first few weeks of life, my nails went from normal, newborn nails to deep yellow, then turned deep red, to brown, and then started to curl around 3 weeks old. My first prescription of Nystatin did not cure the thrush, so I started a second dose.
At my 1 month well visit I was still suffering from discomfort, poor eating and poor weight gain. The doctors still thought I had thrush, and since the Nystatin had not worked, my concerned doctor prescribed something a little more aggressive called Diflucan. My nails were changing yet again, this time starting to fill out into this odd bubbled, thick nail. They grew thick and tall instead of long. My voice was hoarse and raspy, which my family attributed to my constant crying. Everyone was very concerned about what was going on and why all these various things were happening and not getting better.
By my 2 month well visit, I was considered Failure To Thrive. I had dropped below 3rd percentile on the growth charts. I was 2 months old and weighed only 8 pounds 1 ounce and was 22” long, compared to my birth weight of 6 pounds and 9 ounces. I cried 24/7 from hunger and being tired. I had a hard time getting good rest because I was hungry, but when I tried to eat, it hurt and it could take over an hour for me to eat just 1 ounce of formula. My parents worked with my pediatrician to find a formula that would work for me, and tried several different bottle types. I just found eating too painful. All 20 of my nails were still thick and abnormal, and after yet another failed attempt at a thrush medication (that makes 4 failed prescriptions total and, of course, all thrush treatments would fail, because I did not have thrush), my family and doctor were very confused and concerned.
At 2 months old, I was admitted to a children’s hospital. I saw several different doctors, was on isolation, the works. No one seemed to know what was wrong with me. I saw Infectious Disease, Immunology, ENT, Gastroenterology, Genetics, Dermatology, and more. The doctors first thought I had Chronic Mucocutaneous Candidiasis, an immune disorder where your body can’t fight yeast. After test results came back negative for yeast (or ANYTHING) on my nails and tongue, the doctors were left yet again scratching their heads and searching for an answer, as clearly we were no longer dealing with what they thought was thrush.
After about 5 days in the children’s hospital, my dermatologist came in with a possible explanation: Pachyonychia Congenita. No one had seen this in person and it is ultra rare, but it would explain all my symptoms. The more my parents researched, the more it seemed to fit. The hospital finally set it as my diagnosis and I was treated with a feeding tube to alleviate my hunger and spare me all the pain drinking from a bottle seemed to cause.
My family found and reached out to PC Project while we were still in the children’s hospital. PC Project connected us to other PC families and gave us answers we were searching desperately for.
I am a spontaneous mutation and after doing the genetic testing, I am confirmed to have PC-K6A. I am now a thriving infant! Although research isn’t complete, PC Project scientists believe there may be a connection to First Bite Syndrome, which is why eating was such a challenge as a newborn. The feeding tube gave me a break and eventually, slowly, I learned to eat on my own again. In January of 2014, I weaned off the feeding tube completely! My nails are now considered normal for me, and my aunt takes expert care of them, using special tools to keep them at a comfortable length and ground down to a comfortable thickness. I was able to put all those nasty thrush medications behind me since I never actually had thrush. What looked like thrush is actually normal for PC-K6A and is called leukokeratosis. Although my tongue always has the “white stuff,” sometimes it isn’t quite as noticeable. ENT confirmed that the leukokeratosis is growing near my vocal cords, causing my hoarse voice. I am still experimenting and learning how best to make sounds, but I cannot do a high pitch squeal like other babies my age.
I have PC, but I am a healthy, happy little girl. Since I am not quite walking or crawling yet, the red bumps and painful feet are not present symptoms, but my family and I will be prepared for that. I have an amazing support system, loving family, and the best big brother to help me through it all!
Thank you for reading my story!