BEAUTY BEYOND OUR IMPERFECTION
My name is Onyinye Maduka and I was born with a rare skin condition called Ichthyosis.
What is Ichthyosis?
Ichthyosis refers to a family of genetic skin conditions which affects 1 – 300,000 people (according to FIRST which means Foundation for Ichthyosis and Related Skin Types). It is a process whereby my skin becomes dry and scaly. It can also be painful. There are more than 20 types of ichthyosis and my particular type is called Lamellar Ichthyosis (LI). Ichthyosis comes from the Greek word “ichthys” which means fish because my skin looks like fish scales. It affects people of all ages, races and gender equality. There is no cure for this condition but it can be managed. I try as much as possible to bath twice a day and also apply Vaseline on my skin to moisturize my skin in order for me to get blisters. It can be inherited through Autosomal Recessive genes which simply mean that neither of my parents suffers from the condition but they passed the condition onto me.
Growing up wasn’t easy for me. My skin has always been my biggest insecurity right from my primary, secondary and university educational levels. When I was younger, I had no slight idea of what my skin was all about. It was a painful experience for me and most especially my parents who could not understand what my skin condition was. My parents took me to a hospital for proper diagnosis, but the doctor has no idea what they were looking at. The doctor thought that it was just a normal skin condition and I was given different types of medication. My parents tried as much as possible to buy all the medication for the supposed skin condition. I was ashamed of myself; I became timid and shy because of the reaction I got from people.
Have you ever had this kind of feeling where you find yourself in a particular area (school, market or mall) and when people see your imperfect skin or visible difference, they become afraid and run away from you? Little children will see you and begin to shed tears as if they just saw the ugliest monster and they run away from you as well. That has been the day to day challenges I get from people and it has made me more depressed and lack low self-esteem.
There was a time I entered a bus going to Aguda, Lagos and a lady saw me and began to shout Jesus Christ!! She could not enter the same bus with me and the passenger sitting next to me could not come close to me because he felt like it was contagious. That scenario made me feel bad as tears began to roll down my cheek. Whenever I go out, people tend to stare at me. They would whisper among themselves wondering why I look this way. I’ve received comments like I was ugly, possessed, cursed and most people will stop me and ask random questions as to know if it was fire, sunburn, hot water, gas, acid, or if I stepped on poison or if my mum stepped on poison while she was pregnant but none of these comments is true. I began to wonder what I had done to justify these rude comments, isolation and self-pity. No matter how hot the weather was, I had to put on turtleneck long sleeve top and a trouser with a long scarf or a long gown in order to cover my imperfect skin.
My aunt (my dad’s sister) on the other hand has been the one inspiring me positively. She would say to me, “I know that you are different from everyone but that doesn’t change the fact that you are beautiful the way you are. You have this skin condition but it is not going to stop you from pursuing your goals and reaching your full potential. You need to love and accept yourself the way you are in order for you to survive. All those comments that been negative in your life should be turned into something positive. You have a story that can change someone’s life, use that to inspire others. It took me a decade to actually understand what she meant.
My aunt and I visited a Dermatologist in Enugu for proper diagnosis. After a series of diagnosis through eyesight and with help from Google, we were told it is Lamellar Ichthyosis. I was expecting a cure for the condition but we were informed that there was no cure for the condition but it can be managed. I didn’t know how to receive it. I did not know how to deal with it. I became more depressed. The doctor and my aunt kept on encouraging me positively.
One fateful day in 2017, I felt like enough is enough. I met a nurse at the hospital who encouraged me and told me about a lady with white patches on her skin who passed through a lot of discrimination from people but she decided to come out of her shell and embrace her uniqueness and living her life to the full. When I got home, I was so inquisitive to know more about the lady. I didn’t know when I voiced it aloud and my younger sister showed me the lady’s picture on her phone and her name was Winnie Harlow (a model with a skin condition called vitiligo) and when I read her story on Google, I was shocked. I began to ask myself this question, “Am I going to let people’s stares and comments define me? Am I going to sit down all day all night with tears in my eyes because of the way I am being treated?” I decided to change my perception of thinking, I began to change those thoughts that had been negative in my mind into something positive. I began to see how beautiful and unique I was.
I took it upon myself that I was going to Yaba market to buy a sleeveless top, a short skirt and a beautiful gown and the first day I tried putting on those beautiful sleeveless top and short skirt, OMG people were literally staring at me. They were whispering among themselves but I did not let them play with my emotion with their stare and whisper and that was the day I found my confidence.
I want to encourage you all that you should love the skin you are in, it could be your skin colour, body size, shape or skin condition (psoriasis, freckle, vitiligo, scars, etc.). We are all beautiful and wonderfully unique in our own way. Embrace your uniqueness irrespective of how nature births you. It is our differences that make us beautiful and strong. Don’t be ashamed of who you are.
I’m going to leave you with these songs I love so much: