“Taking Care of Myself is not Selfish”
Barbara K.

My siblings are two older brothers; the oldest has normal skin, the younger one had ichthyosis of undetermined type, because he never went to a dermatologist regarding his skin. He was a typical rough and tumble boy with the veneer that he didn’t care about his skin. He was also the middle child. My parents were uninformed, as in the early 1940’s when he was born, the doctors didn’t know what was “wrong” with his skin. They assured my parents that if they had more children this would not happen again, “one in a million” chance of two siblings having the same disorder in the same family (Yeah, right). This was in very rural Upper Peninsula of Michigan, not a hot spot for medical research at that time.

Our family never spoke of “it” (the skin problem) and never did anything different for him. WWII was just heating up, so there were other concerns to hold everyone’s attention. My brother grew up being “different” from the other kids, hiding behind a tough exterior and deep into denial. His only treatment was Vaseline or A&D Ointment after a bath. One teacher scrubbed his neck with scouring powder because she thought it was “dirty”.  Oh boy, my mom took care of that mistake!

My parents took the chance and had one more child after WWII. Being born in the later 1940’s in a rural area of the Upper Peninsula of Michigan, the doctor’s still had no idea what was wrong with me either. My father finally got his “little girl” and she was one in a million with ARCI-lamellar ichthyosis. I didn’t look like what anyone expected, certainly not the cuddly, healthy little girl they had dreamed about. My birth weight was low, even though I was full term, but they sent me home just the same, with a jar of Vaseline and no other instructions or hope.

My family did the best they could and I had a happy early childhood due to ignorance.  We learned by trial and error. Because I was the “girl” and could not hide behind being a rough and tumble boy, they did try to “improve” my skin condition. We tried anything that sounded like it would moisturize, including shaving cream, greasy ointments, olive oil, and of course Vaseline.

My solution was to be a “tomboy” and wear long pants, long sleeves, and a tough attitude with a full dose of denial.

Denial ran rampant in my family for many reasons, so we didn’t discuss, learn, share or educate ourselves regarding skin disorders or the possible treatment. We just kept on going. I do not ever remember one conversation about our skin disorder within my family; I am not even sure how old I was before I realized that my brother had the same disorder.  And there was nothing to be done about it, so we lived with it, quietly. I was ashamed that I wasn’t the pretty little girl my father always dreamed of having, so I tried hard to be a “good girl” instead.

School age kids can be so mean and flaky skin gave them a lot to work with for teasing. The flakes round my desk at school where a constant reminder that I was different. Long sleeves and long pants (no pants at school in those days) cover just so much. I so wanted to be like everyone else, I wanted to play outside when it was hot and I did. I wanted to go swimming and then play in the sand, and I did. I didn’t want to put on all those smelly creams and lotions. I just wanted to be a “normal” kid and I worked hard at being just that. I sat in hot cars, (no AC back then) picking at my flaky skin when I thought no one would see me, swiping up the blood when I picked too deep, feeling light-headed from the heat but determined not to ask for help, whine or stay home.

When I was about 12 years old my dad had a meeting in Grand Rapids Michigan. So my parents took me to my first dermatologist. This was a big deal for my parents, a long trip to a big city and admitting to a problem and needing help.  We were all anxious for help, education, and most of all treatment. It was a short appointment, devastating for my Mom. We were told that my skin disorder was my mom’s fault, as the doctor said she had dry skin also. There is no cure, vague treatment, and no time to talk.  We got a bag full of different creams and lotion samples to try and send us on our way.  Even at that age, I could see the shame and hurt in my mother’s eyes because she truly believed this was “all her fault”.  No one dispelled that myth and my mom died years later, still believing her two children were burdened with this skin disease and it was her fault. Once I learned the truth, years later, I told her in a prayer, that it wasn’t her fault alone and there was no blame to go around.

In school I was a good student, had some girlfriends, but no dates, no dances, no proms. But why would I expect more?  Who wanted to date someone with my skin? Can’t say as I blamed them, but oh how I wanted a prince to rescue me. I married the first guy who asked (or I could talk into asking) and it lasted less than 3 years.

During my second marriage (1970’s) we had good health insurance so I finally was able to go to a local dermatologist to see if there was anything new to try.  I was finally diagnosed with a mild form of lamellar ichthyosis.  We set upon a treatment plan, he wrote prescriptions for compounds of his own design, and gave me samples to try, material to read and finally I had a plan and help to treat my skin. However, most importantly, he also gave me the website to FIRST.  What an education THAT was!!  I was not alone and yes, people were working on better treatment and research for a cure.

My skin improved, my self-esteem improved and I started to learn about my skin disease and others just like me from FIRST. A whole new world opened up to me, EDUCATION about ichthyosis, what it is, how it works, how to treat it, and how not to get into trouble with overheating, and how not to be ashamed. I poured over every article, read everything I could find, cried over the stories of children with much worse problems than my own.  Finally, I knew there were others just like me, some better off, some worse, but all affected.  I tried new things; I took better care of myself and didn’t feel guilty if I had to ask for help on a hot day.  I met a local lady with the same disease and we had coffee and shared experiences and treatments and I continued to learn.  I learned not to be ashamed to say, “It’s too hot for me” and stay inside. I learned to buy (spend money on myself?) Polar wear to help stay cool on hot days so I could go with the family on a picnic or mow the grass and not faint from overheating. I learned to be good to myself and not feel guilty or ashamed.

I have watched with great interest over the years how FIRST works to help the young children with their self-esteem issues with books, education for teachers, parents, family and friends. They help the kids feel better about themselves and less alone or singled out. I love seeing how they help educate parents to handle problems with other kids, schools, other parents and strangers. It warms my heart to know that the affected kids, and their families, today have so much more support and so much less denial than we did when we were young. No there is still no cure, but there is so much more hope and help to make that difficult road a little easier to travel.

No, life with ichthyosis is not easy, never was, never will be. It is an hour-to-hour battle to be comfortable in my own skin, less itchy, less painful, less self-conscious, and more normal. Every time I reach to scratch my body somewhere I am reminded that I am different. Every time I vacuum the house, wipe off a chair seat, or brush the “crumbs” out of the bed, I am reminded I am different. But the days of trying to hide or melt into the background are over. Thanks in a large part to FIRST I have learned that being different is not the same as being bad. I have learned I am not alone, and mine is not as bad as some afflictions. I have learned to be grateful for learning to be compassionate and caring about others, for learning to take time to take care of myself (and that isn’t selfish) and for being able to look past the problems of others to see the real, often scared, person inside.

Now that I am officially a senior citizen, reflecting back on my life shows so much pain and shame for my entire family that didn’t need to happen. It reminds me how very important organizations like FIRST are in educating those affected, their parents and siblings, grandparents, teachers, employers, and friends about ichthyosis and the related problems. There is no need for shame or blame. We don’t need to “tough it out” or deny we need help. What we need is compassion, understanding, education, and good self-esteem. With that we can do whatever we want in this life, happily and freely, like a butterfly.

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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.