gene testing in UK

[Guest guest]

Also on a slightly different issue, a little while ago we spoke to a

geneticist at Moorfields who didn't know much about BPES but gave us

an email adddress for someone who could tell us how to go about

genetic testing for type 1 or type 2 - or partial or complete deletion

as they seem to be calling it now. BPES is in my husband's family but

we don't know which type. We haven't yet decided whether to go ahead

with this testing or not.But I thought I'd share the address in case

any of you wanted to find out more details:

alexander.wyatt@...

Tessa

[Guest guest]

Hi Tessa ( and other people in the UK)

When I wanted to get more information about the genetics side of

things I asked my GP to refer me to a genetics doctor. I got an appointment at

the Institute of Child Health at Great Ormond Street. I found

them to be very knowledgeable and informative. The consultations usually lasted

an hour, and there was no pressure to hurry.

I am sure that there are other very good genetics clinics around

the country.

I am not surprised that at Moorfields (for those not in the UK,

Moorfields is an eye hospital, one of the best in Europe) they were unfamiliar

with the genetics side of things.

Regards

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of tessa_mackenzie

Sent: 01 October 2007 14:12

blepharophimosis

Subject: blepharophimosis gene testing in UK

Also on a slightly different issue, a little

while ago we spoke to a

geneticist at Moorfields who didn't know much about BPES but gave us

an email adddress for someone who could tell us how to go about

genetic testing for type 1 or type 2 - or partial or complete deletion

as they seem to be calling it now. BPES is in my husband's family but

we don't know which type. We haven't yet decided whether to go ahead

with this testing or not.But I thought I'd share the address in case

any of you wanted to find out more details:

alexander.wyatt@...

Tessa