Ichthyosis Awareness Month: Denise and Marc's story. "For every ignorant person, there was a kind one as well."

Denise and I came into contact after I saw a feature with her, her son Marc and my friend - the amazing appearance activist hero Rick Guidotti. Rick took photos of Marc in his studio.

Marc has Lamellar Ichthyosis, and from what I hear from Rick, he's an amazing young man.

This piece is so moving. Like many of the stories of parents of children with Ichthyosis, Denise's shows how much life can be changed because of adjusting to a rare and severe condition. But it also shows how much life changes when we get used to living with Ichthyosis.

Meet Denise and Marc.

"March 2, 1997- That was the first time I had ever heard the word. Ichthyosis. I couldn’t spell it and I could barely pronounce it.

June 1996 - I found out that I was pregnant with my first child. My husband and I were ecstatic! We had moved into our house about a year ago and the time was right to start a family. The pregnancy was uneventful…some morning sickness the first few months, but then I felt great. I read What to Expect When You’re Expecting religiously each month so I knew what was happening inside my growing belly. Not once did I see that word. Ichthyosis.

March 2, 1997 - I left for the hospital after watching Saturday Night Live. I watched it as a distraction from the contractions. Driving to the hospital I was prepared to meet my baby. I had the vision of a cute face, head full of hair (I had heartburn throughout the pregnancy) and soft, smooth baby skin. I didn’t know it then, but I was going to hear that word. Ichthyosis.

My son was born by c-section at 4:22am. He weighed 7 lbs. and he was 19 inches long. I heard him cry, the nurse put him in my arms for what seemed like only a second. A nurse told me he was going to be examined further because his skin was a little redder than it should be. I didn’t think anything was unusual about this. He had ten toes and ten fingers. What could be wrong?

I was wheeled into recovery. The doctor came in and told me my son had a skin condition. He wasn’t sure what it was, but he called a dermatologist to take a look. He would be here once he was done seeing patients. Eight hours later, I would hear that word for the first time. Ichthyosis.

The nurse took me into the NICU where my son was. As I entered, I heard a baby crying loudly. It was my son. There he was with only a diaper on. His skin wasn’t red, but it was shiny. It looked like plastic. The nurse assured me he would be okay. She said she had seen a baby like this before. She put my son in my arms, and he stopped crying. I was finally able to hold my son.

I barely slept and although it was only hours, it felt like days later when I finally met the dermatologist. He told me my son was born with a collodion membrane and he had ichthyosis. We wouldn’t know if he had lamellar or CIE until he shed the membrane. I was trying to understand what he was saying, but it didn’t make any sense to me. How could this be happening to my child? Why was he born with this condition? Why didn’t I read about this in the baby books?

That word - ichthyosis - was written on a piece of paper and it was left on the nightstand. I knew I had a lot to learn.

May 2014 - I have learned a lot about Ichthyosis since my son was born 17 years ago. The word that I could barely pronounce is now part of my everyday vocabulary. I can now spell the word with ease and I could talk your ear off about his condition. I joined the Foundation for Ichthyosis and Related Skin Types (FIRST) and have met some incredible people. Over the years, FIRST members have showed me that my child will be able to live a normal life and he will be more than “the kid with the skin condition.” FIRST has been a valuable resource and a great support for me and my son, too.

I learned that there are ignorant people in this world. Some people just say things without thinking. But for every ignorant person, there was a kind one as well. There were those who would ask politely about my son’s skin. They wondered if it hurt or if he was in pain. Those were the people I didn’t mind talking to about that word. Ichthyosis.

I learned what creams worked best on my son’s body. I learned about lactic acids and retinoids. I also figured out that doctors don’t have all the answers.

Another thing I learned was that time goes by very quickly. It seems as though it was only yesterday that I was bathing my son three times a day and “lubing him up.” Now at 17, he is the sole provider of his skin care (it’s been that way for quite some time now), he is asking to drive, marching in the high school band, preparing to take the SAT, and discussing plans for college and his future.

I learned that the saying, “It doesn’t matter what you look like on the outside…It’s what’s on the inside that counts” is really true. I stopped noticing my son’s Ichthyosis a long time ago. He has a great personality and has always been very outgoing, even at a young age. Once you meet him and get to know him, he is just like any other teenager.

I have such vivid memories of the first time I heard that word. Ichthyosis. I truly believe I was given this child for a reason. Maybe it’s because I’m a teacher, so it is natural for me to educate others about his skin condition. Perhaps my job is to offer support for parents who find themselves hearing that word for the first time. Ichthyosis. Whatever the reason, it is what it is.

I am the proud mother of two handsome boys. It just so happens that one of them has Ichthyosis. It hasn’t always been easy…but I wouldn’t change a thing."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.