HI I have had p since i was 7, i'm 34 now. I have 90% coverage including my face, hands and feet. I have never been clear.
My story is one i try to forget, been the victim of name calling, staring and other peoples ignorance. It started when i broke my leg, one small patch which rapidly grew.
In school i was made to sit in the library at lunch time (which was normally reserved for kids that were ill) and made to use disposable cutlery and paper plates. I endured a constant battle with my mum as she would not let me wear trousers, gloves and wellies in the summer.
As i grew up i just about managed to get by. Eventually i thought i had met the man of my dreams and life felt pretty good until i got married. My so called friends were really cruel on my wedding day telling me " you were the last person we ever thought would get married because of you know what" well my marraige didn't last, he found someone else who didn't have "bad skin".
I changed my priorities, passed my driving test, bought an old banger and began holidaying abroad. I began to feel pretty positive about myself, it was at this time i met my current partner of 9 years. I was taking MXT but getting bad side effects, my partner encouraged me to change my dermatologist and even came to the appointments with me, after trying yet more puva and various creams and ointments i was given cyclosporin. This helped for some time but i was advised against long term use. To make the my story shorter we made a decision that now we have 2 lovely sons we really didn't see the point of having any more kids. My derm has prescribed me neotigison which even only after a week has made a huge difference to my skin, my face is finally starting to clear.
Until being diagnosed my family had never heard of p and knew of no relatives who had it.
If my kids ever develop p i hope to keep as positive as my parents were with me.
I forget that i have got it and my family appear to take more notice of other peoples reactions to me than i do.
Life isn't always wonderful and i have my bad times too, when life gets really bad and i want to cry my partner sits and craddles me until my tears run dry, then reminds me of what is really important to me and why i carry on with life, my 2 gorgeous kids.
I am looking forward to next summer (t-shirt and shorts) and not worrying about p , if i've got it i've got it and if people are to ignorant to ask me about it i'll let them do the worrying.
thanks for listening
NikkiC
