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"My Amazing Twins"

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grannylyn65 Sun 28-Aug-16 14:01:43

I have nf 1, as does my son and grandaughter, my daughter has 4 children, none of whom are affected. Fortunately, we are not badly affected but Dgd has to have mri scan yearly.

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Deedaa Fri 26-Aug-16 20:36:36

It was such an interesting programme. I had seen him before but had no idea he has a twin. How awful to see that the effects of Agent Orange are still spreading through the generations.

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PRINTMISS Fri 26-Aug-16 17:14:03

That should read we were uplifted, sorry!

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aggie Fri 26-Aug-16 17:08:52

It was a very interesting and sad programme , I know a little girl who has the same syndrome , her tumours are in her gut , but she is ok at the minute , she had to have tongue reduction . She is at school and doing really well

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PRINTMISS Fri 26-Aug-16 17:03:01

neurofilbromatosis
I did not know that such a thing existed, but yesterday evening I watched on BBC2 the story of twin brothers, one of whom suffered from - I think it is abbreviated to nfl. If you did not watch it, may I suggest you catch up with it if you can. How one young man can suffer so much sadness and pain, and still be as cheerful and friendly, I do not understand. It is a story of twin brothers who are obviously very close, and their mother who has had to live with their problems, and were uplifted.

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