I have two boys and a brother with Ichthyosis.
I can cope with the skin and the other problems that go with that, what i am having problems with is coping with the Autism and ADHD, I am finding that very hard to deal with and its very upsetting for them and for me and my partner. I dont know who cope's with it better, but we try to deal with it in our own way's, and i spent long long time greving for the children they should have been, but i love them none the less for it.
And what worries me most is whats going to happen to them when they become adults, and when i cant cope with them any more.
I do worry about some of the thoughts i have had and i tell my self to get a grip all the time.
But that doesnt stop the dark thoughts that i have had.
About Me
- gail english
- i will give you a run down on what XLI is, then what my family have X-linked ichthyosis is a condition due to an inherited deficiency of an enzyme called steroid sulphatase. This enzyme is found throughout the body but seems most important in the skin. When there is too little enzyme the skin can't shed normally so it appears dry and scaly. All of the skin can be affected but the face, scalp, palms and soles are relatively spared. The skin scales can look brown or pigmented at times and this can lead to teasing at school as people misinerpret this as being unwashed, and it's nothing to do with personal hygiene. The abnormal gene that causes XLI is carried on one of the sex chromosomes called the x-chromosome. XLI only occurs in boys (who have 1 X-chromosome). Girls (who have 2 X-chromosomes)can be carriers but their skin is normal. But my two boy's and my brother have a large deletion wich is rare that has knocked out a lot. including the NLGN4 gene that is responsible for an increased risk of ADHD and autistic spectrum difficulties.
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