Today we meet Vicky .. this is her version of events..
My daughter was 7 when I first noticed a little dry patch of skin on her head, just an inch or so past the hairline at the front, it was circular and dry. I just though it was a dry patch and treated it with moisturiser. Then she got another one, it was the size of a 50p piece on the side of her head it was read and scaley and a bit itchy. After an internet search, I though it might be Psoriasis (now referred to as P) and took her to the doctors. We had some steroid cream, which didn’t work, and it progressively became thicker and more scaley, they tested for ringworm, but it wasn’t. I was given steroid cream and asked to try that. That was just the beginning.
Over the next 4 years, the patches grew and grew until about 75% of her head has P. Non of the steroid creams worked, no shampoos, nothing. we tried allsorts, chinese medicine ( a £35 consultation and a bag of dried herbs to infuse) this was so unpalatable to a child we never went back. Herbal tablets from ebay, which only made her feel sick. baby oil, olive oil, conditioner neat. Anything to loosen the crust of a skin which covered her head. We found the doctors not very helpful, it’s a very emotional thing for a parent to cope with, not only did I see her confidence diminish but my beautiful girl has something not so beautiful and I was helpless in helping her. She never allowed her friends to touch her hair or do ponytails as they do to each other at that age. In year 6 she went on a week trip to an outward bound center. I had to tell the teacher about her condition, which my daughter found acutely embarrassing, and teacher had to treat this for her whilst away. The thing which upset my daughter the most was the fact that the teacher wore latex gloves to do this. Of course this I understood, but she didn’t and took it as a personal slight. She felt contagious. She had to be excused from swimming as it drove her mad the itching, of course all the girls wanted to know why, and all the boys assumed she was on her period, she hated it.
About the time she moved to secondary school, I changed her doctors surgery as I became aware that she needed someone with an interest in skin. We found a much more understanding doctor, who understood that the ointments used to clear the scales were thick as peanut butter and very impractical, but, a necessary evil. I needed that, someone who understood the emotional side of seeing my daughter cope with this on a daily basis.
We saw a specialist, who confirmed P, one look at her fingernails all pitted did the trick. She explained that we needed a 2 week intense treatment of Cocois to remove the plaque before we could even consider actually treating the P. As it was the 6 week summer holidays we set to. She was very good, and had the treatment every night, parting hair into sections, applying cocois,sleeping over night, gently lifting it off each morning before attempting to wash it off. Each morning was like I had crumbled up a couple of digestive biscuits and combed them from her hair. You can never really get this cocois out with 1,2, or even 3 washes. It was a thoroughly miserable fortnight.. However, it did remove most plaque and we were able to begin treating the P. Her hair cleared within 3 weeks. It was like a miracle to me, I just wanted to kiss the new parts that weren’t covered in thick crust. I kept asking her if it felt better, she said she didn’t notice. When she went back to school it started to come back in patches, the same treatment did nothing, the patches grew and joined, it spread to her ears and bits began on her trunk. The doctor was good, she tried lots of things, we have exhausted them all now. She cried one night and told me she didn’t know how to cope not having the P, she was so used to it being their and she sat most nights picking it from her hair line. I understood, she probably couldn’t remember not having it.
Slowly it all came back, and her back and front are covered in small patches now, with an appearance of small pox. When you hug her you can feel it through her clothes. She is 16 now, and at collage. She has a small group of friends who know she has it, I suspect most can see it but don’t say anything, her parting is yellow and crusty. We treat once a week, with cocois and her steroid gel, which I mix together. It helps a little. In an ideal world, I’d treat 2 or 3 times a week. But it’s not practical to comb and wash that out before collage. Besides it’s sore and burns. At its best it’s bad, and at its worst it is like a thick painted crust all over her scalp, so hard you can’t shift it. As the skin continues to grow, it clings to the hair shaft and grows with it, creating hard scales clinging to the hair, you cannot brush them out as they are solid, you have to pinch them with your finger and thumb and pull them off toward the end of the hair.
She is much more at ease with it now, she tells me she doesn’t care if anyone sees it. She even wore a vest this summer, that was progress. She will have to live with this unless a miracle cure comes along, I have heard of symptoms getting better in pregnancy, but who knows. I love her dearly, I worry about the future for her, will someone love her with this, how will she deal with it when she leaves home. I have had many sleepless nights of worry. I think I too am slowly coming to terms with it as she grows up herself. It is not easy having it I’m sure of that, but I also know it’s not easy seeing someone you love with it either.we were always honest with her. Told her P was just skin that grew really fast. She found it acutely embarrassing. Never told her friends, panicked if they saw bits in her hair. She told them it was bits of leaves blown from trees. Once she heard some boys whispering about her, they called her…lizard skin…she broke her heart. Now if anyone asks about her skin she tells them she has a skin condition. X