Testing negative

[lola261184]

How many people in your families have tested negative x

[Litty]

Testing is SO hard for the whole family.

I was tested and knew I had it coming off my Dad, my sister was clear (that hurt me). My children both have a chance of inheriting it. My son tested a couple of years ago and was OK. My way of coping is to assume they both have it, so I still find it hard to believe because my test results. My daughter is getting married very soon and says she is being tested next year - I am worried xx

[lola261184 in reply to Litty]

Thanks for reply Litty so good about your son. Hopefully your daughter tests negative too x

[Litty in reply to lola261184]

Thank you x

[Litty in reply to Litty]

Thank you again but she had her results today and she unfortunately has it - but she is hoping to have IVF to test her embryos x

[lola261184 in reply to Litty]

Sorry to hear that how did she take the news. Hope your well x

[Litty in reply to lola261184]

not well - but the IVF sounds very good (one of the London hospitals specialises in genetic prevention) x

[Divz_363]

i have one elder sister who is 4 yrs older than me. she is tested negative of sca.but im tested positive. sca3 from maternal side. i have twins one son and one daughter who are just 5 yrs old.i dnt want to get them tested until they are 15 yrs.

[Litty in reply to Divz_363]

Just so you know - may well have changed since my kids little, because I have SCA1 which does not normally kick-in till late adulthood GP said it was their decision as adults (18). Obviously very individual but she said finding out for me was a shock and that easier growing-up knowing. x