Valerie wrote to me in August last year, thanking me for my blog. She told me about her and her brother who both have Ichthyosis, and she wrote “on days like today when my skin is really flared up and the pain is unbearable, reading about you is a true blessing. Thank you for giving me strength today.” And that’s just it – knowing someone else is experiencing similar pain makes you feel you’re not alone. When I read Valerie’s words below, I completely related to her hair breakage – my hair is sparse and prickly too. Valerie is 34 and lives in New Zealand via Mauritius.
“Does my face look red? Do I have stuff in my hair? Why is everyone looking at me?
You would think that after nearly 35 years of living with Netherton Syndrome, one would not care about what people think or what they are saying or if they are even saying anything at all for that matter…
I was born on a little island in the Indian Ocean where the ‘narrow minded island mentality’ can get to you and even worse can scar you for life. My brother and I still, to this day, find it quite hard to deal with the constant staring and whispering when we are trying to get on with our lives. Being from a little island can also be the reason why we were misdiagnosed for 20 years. It’s only when I got to Western Australia to pursue my studies that I found out that I suffer from Netherton Syndrome. As for brother, now 28 years old, he was diagnosed in Melbourne 4 years after.
Living with a skin disorder was tough especially in my younger years. My Mum, my rock, will also remember the tears and the suffering that she tried to hide while bathing me or separating my loose clothes from my skin which was oozing constantly. I am so grateful that my mind chooses not to remember these dark sad moments. I am also thankful that all that pain and suffering has made me the person that I am today. If I was to rewind my life, I don’t think that I would change a thing. It is priceless to be an inspiration to others and to tell me story to others who need a shoulder to lean on.
The saddest part of my life has been my journey without and with hair on my scalp. In 2000, I found myself shaving my scalp completely as my hair all fell off yet again. Instead of not giving a damn about what people thought of my shaved head, I decided to go for the wig option as I just could not take the looks on me any longer. Life with the wig lasted a whole 10 years, until last year when I was encouraged by my partner and my family to let it go and finally be the true me. I will never forget the 4th March 2012, when I took off the wig and faced society. Walking out of Melbourne Central and feeling the breeze, the sun on my scalp and realising that not one person was looking at me… Priceless!
Of course, the hair journey had to get worse before it got better. Six months after I let go of the wig, my hair fell quite dramatically and I had to shorten the length to avoid the patches that were forming. On the day of my birthday, I found myself asking for strength to accept whatever would come my way instead of asking for the blessing of my hair to grow.
I am cherishing all the good moments of my life with Netherton Syndrome. I still flare up… My scalp is still itchy… My face is still red… But out of all the discomfort and pain will come a day when I am better and I take strength in that until the next flare up happens again!
I guess my motto in Life is: I drag the skin disorder along with me… I don’t let “it” drag me!”
For Ichthyosis and appearance diversity resources, click here.