Incontinentia Pigmenti Community
Scared and not sure
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This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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Scared and not sure

Hi. I'm new to this forum and need a lot of help. Let me start from the top. My son is 3½ years old and had a stroke just after birth. He is now Left Heamiplegic. A few months ago I showed his therapist the brown marks I have ALL over the left side of my body. She said that I have to show it to my son's neurologist. Eventhough i've been to so many dr's, I've never bothered to remember what the name was of my skin condition (I do not have any other symptoms and no one bothered to give me or my parents proper information either). I also don't think that the dr's in South Africa knows a lot about IP. They've done biopsies etc, but never told me anything. I then phoned the last dermatologist I saw and he said i've got IP.

My First son is 7 and has NO problems, but my second son had the stroke, epilepsy etc.

Is it possible that I have a 'weak' form of IP or a 'mutated' form, and that this is the reason for my first son not having it and my second son surviving it?

The neurologist said she will maybe send us for genetic testing.

Can anyone please help me! I want to know what is going on with me - do I have IP or not?!

Regars
Inx

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