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Hi Cheryl,
Everyone I have met so far with this condition is in the US! Glad to meet a fellow Aussie. My Mum is turning 65 next month. We meet with the specialist again when her genetics have come back (we are hoping for the better gene needless to say)
So glad that you have remained stable for 4 and a half years... thats really incredible. May I ask if you did anything differently since you were first diagnosed? diet, exercise etc..
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