In 1980 I was five years old, a typical Star Wars kid; Star Trek, Buck Rogers, Lost in Space… you name it I was captivated. My parents bought me as many of the toys they could afford, probably over extending themselves at times so I could have all the Space Lego and Kenner Figurines I could possibly play with. My fifth birthday was no different as I unwrapped an X-Wing Fighter. As the party dwindled down, I stood beside my mother in the kitchen. She grabbed the goody bags for my friends, from the top of the refrigerator, as they left the celebration.
Standing in front of the counter, for whatever reason, I looked down at my thumbnail and noticed something different. There was a small white spot about the size of the pinhead. Trying to scratch it off I found that an air bubble had formed within the layers of nail itself. Without much effort at all picking at it left a tiny hole. It was not painful so I did not feel the need to tell anyone. It would not be for another five years before I would be diagnosed with Dyskeratosis Congenita. Things started to get interesting in 1985.
My grandparents loved to host family reunions, and on this particular occasion my uncle Wayne was relaying a story told many times before about how he and his younger brother Drew were playing around with my Grandfather’s cement mixer when they were kids. This was something they knew they should not be doing and during the course of their actions my Uncle Drew got his fingers caught in the motor’s gears while it was running. The pain was excruciating, but they soon managed to get Drew free and hide any evidence that they were messing around with their father’s equipment. That evening and for a long while after Uncle Drew kept his hand out of the sight of his parents, fearing the consequences of being caught. This left the tips of his fingers slightly mangled and deformed as he got older.
As Uncle Wayne told the story my Uncle Drew held out his hand to show his deformity. His fingernails where brittle, cracked and torn. Other family members stood around to listen to the tale that they had most likely heard many times over, but on this day was different. We all watched, one by one, as my other uncles and cousins also put their hand into the circle revealing they all had fingernails that looked similar. The group was puzzled and not wanting to be left out of the event I spoke up and showed that my fingernails were turning out the same way.
This is was the event that sparked a on going series of doctors appointments. First we were told that it was just a nail fungus, later we were told it was just weak nail beds and to put clear coat nail polish on to harden them up. It wasn’t for some time that we were diagnosed with Dyskeratosis Congenital (DKC or DC). After more appointments with poking and prodding, we were finally given a genetic layout. DKC was carried by females and passed along to their children. Girls would show no signs but most likely pass it along, boys would so signs but have no threat of passing it their children… as we were told in 1986.
…To Be Continued.
Written by Matthew Fava
This page was dictated using voice recognition software. Please excuse any typos or grammatical errors.