Family gene.

Tanith the fact that both your sister and her husband have the gene suggests that for the gene to express itself both parents have to carry it.

If their children marry people who do not have the gene, I think their children may be OK.

Having googled Usher Syndrome, the above seems to be the case. I would google the syndrome, there is a lot of information on line and most from authoritative sources. The genetic side is discussed as well as the illness itself.

Thanks Monica I have looked at some Ushers sites and you are right both parents need to have the rogue gene but there was no mention of siblings of the parents carrying the gene. Apparently there is a 1/25 chance of passing it on to a child but it gets complicated as to siblings..

I wonder if my GP could point me in the right direction maybe.. I'll keep looking I think.

There is a genetic test available. If your grandchildren want to find out if they are carriers. They should ask their GP. This might help them decide about having families if they are worried about having a disabled child.

In a family where a gene for a known disease is carried those affected can get genetic counseling through the NHS, with their partner, if they are considering having children.

DDiL comes from a family with a very high incidence of stomach cancer, her father died of it when she was 6. She and her sister were offered genetic counseling quite some years ago and know that they do not carry the gene.

Thank you Monica that's just what I was hoping for I shall pass that news on. So if I get tested myself the result if neg will rule it out for all my grandchildren. That would solve the dilemma

Your GP should be able to refer you.

Thats what I'm hoping Anya

We had blood tests via the NHS - there is a service that deals with these issues. We now know who is carrying the CF gene. It is a free service.

Thanks Luckygirl