Message Thread

"King Denborough Syndrome"

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by: Robert Ryan
on 11/20/2009 at 2:24:20 PM

Hello there,

I live in Scotland, and have had King Denborough Syndrome albeit the Doctors thought it was Noonans Syndrome at first but then changed their mind after a muscle biopsy. I am 22.

My question however is is there anybody here with this condition? I have never met anyone with this condition and I'd be delighted to read about anybody's thoughts on the condition, their experiences day to day or short to long term.

I find myself getting tired over medium to long distances while having an inability to pick things up. At an aesthetic level, I find my 'pigeon chest' very frustrating also.

Best Regards,

Robert Ryan