“These distressing lesions almost never lead to serious long-term morbidity, although they often result in time-consuming, expensive, and typically fruitless diagnostic evaluations in an attempt to diagnose other diseases."
“Blindness and psychomotor retardation, on the other hand, constitute the most serious acute and chronic complications of this disease. When they occur, they are tragedies for the patients as well as for their families. “ Morton F. Goldberg, MD http://archderm.jamanetwork.com/article.aspx?articleid=480574
This is why it is so important to get a correct diagnosis immediately. Dr. Goldberg goes on to say how imperative it is to seek ophthalmic and neurologic specialists immediately after diagnosis. The IP BioBank will help us to move in the right direction with avoiding the epidemic of misdiagnosis. I’m not sure of the exact percentage but I know from our private family group a good many of us received a misdiagnosis in the beginning. That lost time is so valuable and many of our children can’t afford it! Let’s get the word out that this effects much more than just the skin… in fact the skin is the least of it!
October is IP awareness month... Spread the word... spread awareness!
Fun Fact: Our eyes are always the same size from birth, but our nose and ears never stop growing.
Bonus Fun Fact: Goldfish can’t close their eyes as they have no eyelids!
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