What is the current knowledge of treatments for Von Recklinghausen disease?

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Offline thedoc

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Ann Hawke  asked the Naked Scientists:
Hi! When my son, Owain, who is now 23, was 15 months old we discovered that he had NF type 1 (Von Recklinghausen disease). It was a fresh mutation - and there is no history of the condition in the family. We visited the medical genetics clinic in Cardiff to confirm the diagnosis and the doctor explained the condition to us. I remember that he said the next 15/29 years would see important developments for NF sufferers - there are nearly 22 years since then, but I'm not aware of any developments that could help Owain. Since leaving the care of the pediatrician at 18, he is no longer monitored regularly, and is only seen if we perceive a problem. (We live in furthest West Wales!)

Please could you give me an update of the situation with this condition - which I believe is the most common genetic disease but one which does not often make any headline news.

Many thanks


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« Last Edit: 25/07/2014 15:30:02 by _system »