Laura H. - Forest Park, IL - 2012
I was born to Dennis & Audrey Hogan on June 18, 1957 in Evergreen Park Illinois. I was a breach birth and a collodion baby. They did not expect me to live, so I was given the last Rites. I was in the hospital for eight weeks before I was able to go home. I have ARCI-lamellar ichthyosis, which causes many problems such as skin cracks, thickening of the skin on the soles of the feet, which can make it difficult walking, fissures on the fingers, tight skin which interfere with joint mobility, skin buildup in the ears, which can affect my hearing. Hair loss, ectropion, and overheating are also problems associated with my ichthyosis. There is also a psychological issue.
I was raised mostly on the north side of Chicago. I had to learn how to deal with growing up with lamellar ichthyosis. My parents did not treat me any different than my siblings and did not stop me from doing anything.
I went to a handicapped school called Spaulding, as my parents and the Board of Education thought is was for the best. What they did not realize, was that I would be teased there too. It also hampered my education, as the students were being taught at a much slower pace. When I was in 8th grade, I told my parents and the school that I wanted to go to a regular high school. I was told that I could go but I would be placed in a visually impaired class. I didn’t care. I just wanted to go to high school. I was very active. I joined the band, and played the clarinet for two years. I joined the track team and also joined the Girls Athletic Association. Due to my education I was below some of my peers, so I had to have some basic courses and some regular courses, but I improved my education.
I went to Robert Morris College in Carthage, Illinois for secretarial courses. It was very hard finding a job due to my skin condition. Someone recommended that I try to get a government job. I went on many interviews before I got a job at the Railroad Retirement Board, where I have been working for 33 years.
When growing up, I was teased often. I was called baldy, scabby, four eyes, stupid, and dumb by other children. When I was in high school waiting on the stairwell in a line to get ID cards, someone took a pencil and flipped my wig off. I just picked it up and put it back on. This was very hard to deal with, but my mother told me to repeat to myself ‘stick and stones may break my bones, but names will never hurt me,’ but it still hurt. As I got older, I realized that I was not stupid or dumb.
Over the years I have tried many different treatments, such as saran wrap, oatmeal baths, and many different lotions. I was on retinoids for over 30 years, but it has caused some side effects such as bone spurring in all of my joints and spine. In recent years, it was starting to elevate my triglycerides, so that is when we decided to stop them.
I thought I would never get married. I went out with several men who appeared to only be interested in one thing. They thought they had an easy target due to my skin condition, but they soon found out they were wrong. I met a man who I started dating, and then we moved in together. He was not like other men. We lasted for six years together, before I asked him to move out. I was afraid of not being able to afford living on my own, but I did it!
Several years later, I met a man while on retreat. We started talking over the years, then, we started dating. He proposed to me on Valentine’s Day and we had a big wedding on August 13, 2005. You can tell he really loves me for who I am by the way he looks at me.
Forest Park, Illinois
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported 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.