Vanessa J. - Hackensack, NJ - 2013
My name is Vanessa. I was born with lamellar ichthyosis 56 years ago in Brooklyn, New York. When I was born there was a gelatinous sac around me which some cultures call a veil [also known as a collodion membrane.] When the sac was broken and removed, the hospital staff saw that my skin was scaly and I was transferred to the intensive care unit. Eventually my parents were allowed to bring me home, although at that time there were no effective treatments for the condition. They managed the best they could, worked hard, and sacrificed to give my brother and me a parochial school education.
My earliest recollection of being “different” was when I was about 5 years old. People would point, laugh, or whisper to their companion(s) while staring at me. Once, while standing at a bus stop a woman asked my mother if my condition was contagious and then she and her children moved away from us. We lived in public housing for about 15 years and the children there could be very cruel with their teasing and ostracizing. I got into a lot of fights! Although I was very self conscious I was not always timid. The desire to have positive attention made me a vociferous and gregarious (albeit moody) young person. In retrospect my self esteem was low; this led to some negative life experiences.
I attended college and my experiences there with co-eds was much more positive than in grade and high school. Eventually I married and had a daughter (who has a bit of eczema, but skin that is otherwise “normal”). The marriage did not last, but my daughter is, quite honestly, my best friend. Mistakenly believing that I was never going to be in a healthy, relationship due to my skin condition was the basis for many a disastrous (romantic and otherwise) relationship.
One of the psychological and emotional aspects of being seen as an outsider is that of self-loathing. When I made the decision to love myself more than anyone else ever could; my entire life changed. Eventually at the age of 50, I decided to attend graduate school and there I met many people who accepted me for who I was. That’s when I decided to totally accept myself for who I was as well! This change in attitude was an important step in my personal growth and has greatly diminished (but not erased) my self consciousness. Getting my masters degree led me to a part-time teaching position, which has given me a lot of personal and professional satisfaction.
When I finally was able to relax about my condition and have more pride in myself I met a wonderful man, fell in love, and moved to his state in order to be with him. He’s an incredible partner that cares for me and one way he demonstrates it is by helping me manage my skin disorder and making thoughtful and encouraging suggestions like installing a steam shower and he’s always asking me what I would like to drink since hydration is so critical to me. He’s never complained about the flakes or the time I spend on personal care regimens. Lamellar ichthyosis is a tiny part of who I am according to him. It is an organ with a disorder, nothing more. Every human has 78 organs in their body so an affliction of at least one of them is inevitable.
Very few doctors even knew what my condition was in the 1960’s and even now in 2012 when I see a new physician. Doing my own research led me to FIRST and to discover the products that have now my skin look close to normal and feeling more comfortable.
When I bathe I add salts from the Dead Sea to the water as well as lathering with a with Dead Sea salt shower gel, imported from Israel and scrubbing off scales with a ceramic pumice stone/sponge. Another topical product that has made a remarkable difference is 100% natural, unrefined African Shea Nut Butter. The smell of it is not appealing so I mix it with lotions of my favorite perfume scents or essential oils. However, I’m now utilizing much less expensive over-the-counter products to manage this disorder and rarely rely on prescription medication, which has cost me thousands of dollars over my lifetime. A treat that I like to give myself on special occasions is an exfoliating body scrub using an oil and salt combination, followed by a deep tissue massage with an emolliating cream given by a professional at a local day spa. If I’m early enough for my spa appointment, I get to utilize the dry sauna and steam-room which seems to help as well.
I am very grateful to FIRST for promoting research and showing me profiles of other people with this same disorder. When you look different from the general public it can be very lonely. Now I feel like I have a huge community of people that understand what I’ve experienced and how I feel. I hope to attend FIRST conferences in the future to give camaraderie and confidence to parents whose children are affected. On the outside we may have skin of different colors or textures, but on the inside we are all people with feelings, dreams, desires, and hopes trying to reach our fullest potential. We express ourselves through art, science, and sharing the love in our hearts with family, friends, and strangers.
Hackensack, New Jersey
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 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.