Diagnosis of Usher's Disease /how to we prepare to tell her

[Jac]

Hi

I live in Australia and am 26, and the eldest of 5 children. My mum
and stepdad (who have been seperated for about 8 yrs) had my youngest
sister, who is nearly 13. After testing today, it has all but been
confirmed that my sister has Usher's disease...

I'm now trying to read everything i can, but am wondering how we tell
her about this. She has been hearing impaired since 1 and has hearing
aids.

My thoguhts are that we may need to involve a 3rd party, either a
psychologist or a counsellor to help with this, any tips would be
appreciated.

[Mark]

I think that's the toughest part of all of this. My daughter was 8
when she was diagnosed so we've been sort of slowly leaking
information to her. The best advice I heard was to deal with the
issue the same way you would deal with the birds and the bees:
carefully, honestly, and open to any question. One thing I would
stress is that blindness is not a certainty. Even someone with the
worst forms of Usher can expect to have 25 years of useful vision
minimum. With all the treatments that are under development, we will
have viable treatments within the next ten years. There is a very
good chance your sister will never fully lose her vision. That alone
might be a good place to start.

I don't envy you, though. It's a very tough discussion to have. Good
luck.