Haven't been on for a while. I was hoping to never see this vile condition again but unfortunately we aren't that lucky. My sister in law died aged 36 with it and 2 years ago my niece/daughter aged 37 died with it. We are now informed that my nephew who at the moment is aged 36 has the same condition. It was like a giant bomb being dropped on our heads and I am petrified as what is to come. It seems that very young people with this condition don't get much in the way of help and support and neither do their carers. I can say this as we were carers for my niece and I don't think I have ever felt so lost at times as I did caring for her. With my nephew being young and not married we believe that we will be his carers to. We are involved taking him to UCL for genetic testing and research and hope and pray that they will come up with a cure. We realise it probably wont be anything to help my nephew but maybe his and my nieces children will have hope if they end up with the condition themselves, which we know is a 50/50 chance. Would love to chat with someone who is in perhaps the same position as we are and that maybe then, we could help each other through a very rough time ahead.