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30 Jun 2011

Malaysian Rare Disorders Society (MRDS) & Incontinentia Pigmenti

We are planning to register Husna with Malaysian Rare Disorders Society (MRDS). Since in here there no specific support group for IP (Incontinentia Pigmenti). At least, we can get information from the seminars/activities organized by the society.

In summary, Husna was diagnosed having IP after 3-weeks of being born. She developed the symptoms (the skin problem) after 3rd day of her life. along the way, the diagnosis is done based on the physical symptoms on her hair, skins, nails, eyes and tooth. So far, other than being a hyperactive child and a seizure around 1 1/2 years ago, no mental disorder is seen. Thus, there is no special medical care is given, however, we need to monitor her milestones from time to time. We also have to bring her to her dermatologist paed/ophthalmologist at least once/twice a year.

Wish us luck & we're very thankful for the special gift given which I cherish every moment with it.

Below are previous entries which written a bit of her IP's story.

N-1 (Diagnosis)

N-2 (Skin problem faded-all 4 stages). More info of skin problem stages, refer here.

N-3 (Her milestones)

N-4 (Seen Dermatologist/Ophthalmologist)

N-5 (Single episode of seizure)

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