Mai without "E"

Have you heard of the novel “Anne of Green Gables”? When I read this book I somehow compared myself to the main character Anne. Sometimes it feels like Montgomery was describing my own story in the book. I do not have red hair like Anne. Well, at some point I only wished to have a bit more hair, it doesn't really matter which colour it is. As a matter of fact, I was bullied in school for more than one cause. Apart from my abnormal skin, I in addition have unusual hair. If “hair” is classified as an uncountable noun, I think mine is the countable one. Instead of having dark black colour, my hair is rather slightly brown. For that trait I think I took after my grandmother. Due to my bright hair, kids were calling me “westerner chick” or “cowherd” in primary school. If I knew that nowadays girls like to dye their hair a similar colour as mine, I would not have been that dejected. On the contrary I would be very proud of it. Well, if only we could be as wise as thirty when we were thirteen.

My mother always keeps a kind of hope that I eventually gave up on at some point. She often said “you will have nice and thick hair when these skin scales are gone”. I was just waiting without knowing when exactly it would happen.

Alopecia

I would not call this "losing hair” because in order to lose something you have to have it at first. Ichthyosis patients like me do not have a high frequency of hair on the head, of course corresponding with the severity. You know, when the hair follicles are keratinised and malfunctioned, only the strongest hairs can show up and remain. Moreover, the mechanical removal of thick layer skin on the head is also the cause of inevitable hair loss.

Treatment

The purpose of this article is not to complain about me not being able to become Rapunzel. I just want to share some  good news that finally the current dermatologist has prescribed something that I find effective.

When I was sixteen, I was prescribed a type of psoriasis shampoo. I am not sure if it was due to its odour or due to the fact that it was too costly for us, but I disliked that product and stopped using it after a couple of months until recently.

Last year I decided to see a dermatologist. Mainly because I wanted to keep myself updated with the news in therapy for my ichthyosis. It ended up with a to-be-prepared cream and a shampoo called Clobex. On the second week of using this shampoo three times a week, the ‘mama hope’ has returned. I know that this cannot be the cure for the root of my ichthyosis but at least it improves my life quality. I feel much better and who knows, maybe someday I will be as tangled as Rapunzel. (You know that I am just kidding, don’t you?)

Several last words I want to say today are that, if you have given up on something, try again some other time, because maybe it was not the right moment on the first try.

LOL - Lots of love.