Losing the Fear of Never Being Loved

My name is Beth and I was born in 1980 with ARCI-lamellar ichthyosis.  Needless to say my condition came as a surprise to everyone.  My parents had a healthy daughter 3 years earlier, my sister Sara, and did not expect any complications with their second child.  Luckily there happened to be a new doctor visiting the hospital who knew of my  condition and was able to help the doctor’s nurses and my parents understand what was happening to me.  They learned that I should be covered from head to toe in Vaseline to keep my skin moist and well cared for.  My parents were told by doctors not to have any more children, because they might be affected by this disease as well.  In 1983 my little sister, Jill, was born and my little brother, Kevin, followed her in 1985, both of whom do not have ichthyosis.  

I know that I am very blessed.  I was given every opportunity to grow up as normal as possible.  My parents encouraged me to do and try anything that I wanted to do.  My mom coached my softball teams in the summer and she would carry a cooler with ice, a wet wash cloth, a spray bottle of water, and a bottle of water to keep me cool in the hot summer.  In addition to softball I danced, because I loved to perform, with my favorite type of dance being tap dancing.  When I got into high school I was a member of our school’s award winning show choir and theater.  I was always front and center as the dance captain and theater choreographer.  I played high school softball and was a springboard diver for the swim team.  I participated in student government as Vice President of my class and made it on the homecoming queen ballot.  I even placed second runner-up in the county fair queen pageant. 

I think I was lucky to grow up in a small town. I had amazing friends.  My extended family, including aunts, uncle, cousins and grandparents were never more than a couple of blocks away.  Along with my immediate family, they were my guardians, champions, and best friends.  Don’t get me wrong, my life wasn’t always sunshine and rainbows.  Middle school was pretty hard.   This was the first time that I ever really had to learn to get along with new people who didn’t know me my whole life, and most of the girls didn’t like me because I looked different.  It took three years and my parents buying a house with a swimming pool to get the girls to finally take the time to get to know me.  One of those girls is still one of my best and closest friends. 

In high school I met two people who would be some of the most important people in my life.  First, is my best friend Shay.  She was always there for me.  She never judged me.  She always supported me and was willing to tell me that I was being stupid when I was feeling sorry for myself.  The second person was my husband Joel.  I met him my junior year and he was a sophomore.  He was the first boy to ever show interest in me as more than a friend.  He was very persistent and finally helped me get over my fear of never being loved by someone.  We went to two proms together.  I tried to leave him when I went away to college, thinking that I would take that time to see if there was anyone else out there that would care about me the way that he did.  What I quickly learned in those few months that we weren’t together was that I didn’t want anyone else to love me. 

Joel and I got married in 2006 and we knew that after having been together almost ten years we didn’t want to wait to start a family.  We knew we wanted to know if Joel carried the gene that might cause our kids to be affected with ichthyosis.  Before we could even have our appointment, we found out we were pregnant with our first child.  Alexander was born in 2008 and because Joel is not a carrier, our kids cannot  be born with ichthyosis.  My sister Sara asked me why I wanted to see if there was a chance to pass this disease on to my children.  She asked me if it would really matter.  I never thought about it like that before.  I would take the lessons that I learned from my parents, family and friends, and I would raise my kids the same way I was raised regardless of any complications that might come up.   At the end of my second pregnancy we found out that my daughter had a potentially fatal heart defect, and the outcome of that defect could not be determined until she was born.  I was scared for her and the life that she might not get to have, but I knew that deep down in my heart everything would be fine.  Her first cry was all I needed to hear to know that she was alive and anything that would come after that I could deal with because I had amazing teachers.  My parents taught me how to be happy and enjoy the life that I was given.  Eleanor was born in 2011 and she is healthy and has no lingering effects from her rare heart defect. 

I am anticipating the day that I have to explain to my kids why Mommy’s skin is different, but for now, my son calls my dry flaky skin my sprinkles and he says they are scratchy and offers to rub lotion on my arms and hands. 

My parents were thrilled to learn of FIRST when it started just a few short months after my birth.   We attended the national conferences whenever we could.  I loved to go because it was my time to be with people who were like me; people who understood what it was like to be so different.  I loved to go and hear the new ideas and I was always eager to try new things.  With all those new things to try I have stuck to my tried and true prescription for Velvachol cream and 8% lactic acid, and long baths whenever I can to scrub my skin with a pumice stone.  It’s what works for me.  I also like to go to the conferences and share my life.  I like to think that sharing the experiences that I have had, that have been so great, help encourage others like me--especially those younger girls that I see myself in, because they look so much like the way I did when I was their age.  There aren’t that many people that I can say that about.  I want to share my life and encourage them to do and be whatever they want.  FIRST provided me a way to educate the new doctors I had to find when I moved to Indianapolis after college, and as we all know most of them have never treated a person with ichthyosis and they need all the help they can get.  I am so excited to have FIRST in Indianapolis for the next conference and I can’t wait to see old friends and make new ones.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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