Life and God Have Been Very Good To Me
by Clem A.

Tell us about your experience with ichthyosis?
I was born in 1954. I have ARCI-lamellar ichthyosis. The doctors didn't think I would make it. Of course, people would stare or asked if I had been burned, all of my life. When I went to school, the teacher suggested to my mom that maybe I should wear gloves for the benefit of the other children.  Mom said, “Sure if all of the other kids have to wear gloves”.

How did the diagnosis affect your family?
I have a very dedicated mother, a wonderful father and a great brother.

Mom is very loving.  She was always looking for ways to make me more comfortable -always fighting for my rights. Mom is a very giving person and took me to the doctor on the bus with my younger brother until she learned to drive. She always encouraged me, fought for me, took care of my special needs. She is eighty now and has Parkinson's disease. Now she needs a lot of care and I am now taking care of her; helping my dad with her. She was a lot more patient with me than I am with her. But I am trying to take care of her now.

Dad was always loving…didn't let me get away with anything. He treated me and my brother the same. He is honest and hard working and worked his butt off in a factory for 44 years to take care of us.

My brother Paul is always there for me. He does not have ichthyosis.  He is my younger brother but he would always stick up for me if someone treated me wrong.  He is laid back, hard working. He has the gift of gab too. I love and respect him. I kind of looked up to him, even though he is my younger brother.

Have there been any additional health issues due to ichthyosis?
As for my health issues, I had an ulcer on my left eye when I was a baby which left me with very little vision in that eye. Not sure if that was due to the ichthyosis, but it left me with no depth perception.  However, I underwent two surgeries on my lower eyelids, due to drooping of the lower eyelids, caused by the ichthyosis. 

And, yes as we all know I deal with itching every day. When I entered into my fifties, I developed a condition called Mycosis Fungoides - a disease of the skin, a form of cancer of the T-cell. It is now being treated and seems to be under control.

Has ichthyosis affected other aspects of your life? Friends? Work?
I made some good true friends in grammar school and high school. I got a job with the Federal Government when I graduated High School. I have worked at the same agency my whole career. I plan to retire at the end of this year.

Any final thoughts?
I have to say I would not be able to cope with the daily trials if it was not for the love of my family and my friends and most of all my faith in God and my relationship with the Lord Jesus Christ. That is what keeps me positive and gets me through the day. 

All life is precious and I am trying to do the best with what God gave me.  I am so blessed and I have so much more than many. There are so many others who have it much worse than I do.

Life and God have been very good to me.

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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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