Simon lives in Melbourne and like me, he has Netherton’s Syndrome. He writes about his sensory deprivation – the same skin hunger that I felt. Life with Ichthyosis can be so isolating and lonely, and I strongly empathise with both his desire to be touched and sadness about rejection. He also writes about the perception of the condition through a potential employer’s eyes. There’s a low expectation that someone who looks different cannot perform a job – especially not a public one.
Can someone give Simon a go?
“My name Is Simon, I am 29 years of age, born and bred in Melbourne, Australia.
I must firstly and importantly begin by admitting that overall I am quite a lucky person. I’ve been given the gift of being a citizen of one of the greatest countries in the world; where the different and disabled are supported to a reasonable extent by their government. I have a very supportive family (who have always treated me as an equal,) and a great group of friends who I will know and love forever.
My Intellect is of exceptional quality and I have a strong mind.
When I was 4 years old I was diagnosed by leading Dermatologist Dr W.A.D Griffiths. At the time, I was told that I had “atypical Juvenile Pityriasis Rubra Pilaris,” a rare, incurable dermatological condition.
When I was 2 weeks old, I developed a thick crown on my scalp that gradually got worse and engulfed my entire body. No part of me was spared.
My condition is unsightly. My face is very red. I have ectropion (drooping eyelids.) My skin is constantly peeling, almost as if permanently sunburnt. I have many cuts and cracks all over my body, mostly on my hands, arms and legs. My condition is extremely painful and I quite often have to walk with open cuts on the soles of my feet.
Throughout my childhood and adolescence I used to get painful cuts and cracks on the joins of my fingers. I used to keep my hands clenched because it was so painful and as a result of this my hands are fused at 90 degree or worse angles. I also have problems with my ears; A few years ago I had to have a general anaesthetic to clear the thick skin attached to my inner ear. Furthermore I often get infections of my lower legs, which means constant courses of anti-biotics and occasionally a stay in hospital.
My first memory of being bullied was on a family holiday at the beach. A group of kids my age were shouting and pointing at me whilst laughing and chanting “Skin Cancer Kid Skin Cancer Kid!!”
I remember later that day, one of the instigators of the group approaching me and asking me for a token in the games room. I gave it to him. I don’t know why.
Besides being in physical pain, the rest of my childhood was fairly normal and for that I am appreciative.
The biggest challenge of my unofficial new diagnosis of “Netherton’s Ichthyosis” can be split into roughly 2 areas.
As I went through puberty and started to become a man, I have always had the strong urge to experience a physical, intimate relationship with a girl. There have been so many cases where I have been so rudely rejected that I now become depressed very easily. I have approached dozens of girls all to no avail. I feel terribly deprived of touch and intimacy, which makes me feel isolated and alone. However being a witness to all those who have had what I desire with disability included, it is a huge boost to my confidence. Just knowing that there are people out there who can love someone with a disability gives me hope.
I have always been interested in airplanes and travel, and decided to study a Bachelor of Technology (Air Transportation Management) with the presumption that I would have a career in the aviation industry. At the time of my studies I was incredibly naïve as to how labour hire in the private sector works. There have been many situations where myself and uni colleagues would apply for certain entry level roles with the outcome always being rejected for the role whilst my colleagues with the same qualifications were hired and are now quite successful in the industry. I was once told in an interview that my aptitude and attitude was great and the likelihood of a role was near certain. When the Interviewer saw my disfigured hands, he hastily concluded the interview and I never heard from him again.
On the bright side of matters, I have finally met someone who is helping me start up a business of my own so that I can achieve success in life. For this I am very thankful.
I feel that Ichthyosis sufferers and other impaired people are sometimes too hastily discounted and end up on government benefits as opposed to being employed.”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.