hello & so grateful to find this group!

[Guest guest]

Hi my son Todd who is now 3 1/2 years was born with " strange " eyes.

nobody ever told us there was anything really wrong, until at about

6 months he was referred to a paed. who still didn't know what was

wrong so refered on to optomertrist who diagnosed bilateral ptosis.

we were seen by a consultant who confirmed this and ever since Todd

has had sight checks every 6 months. (which have now revealed his

need for spectacles which he is refusing to wear! though we have

been told that this prob nothing to do with his condition and he

would have needed them anyway) I decided to try and find out more on

the internet and discovered that ptosis isn't the end of the story.

we have pushed to see another doctor who confirmed that it is BPES.

we now have some sort of promise for genetic testing, as he is the

only person in either family to have it. we have 2 other boys aged

11 & 8 who are unaffected. I seem to see a

lot on the internet about corrective surgery but at present we are

told that Todd doesn't need it - he lifts his brow and tilts his

chin when necessary. any surgery would be cosmetic. I am so glad

we've found this group and maybe finally we are getting somewhere

with the diagnosis of his condition.

btw we live in Ashford, kent, England and all the " specialists " we

have seen are at our local hospital

[Guest guest]

Hi Caroline and Todd, Clare and Emy from Herts, UK. Just to say a warm welcome to you and your family. We have both been operated on by Mr Collin Moorfields, mine over 20 years ago, Emy 6 years ago. In our opinion the team and Mr Collin are truly amazing. He has travelled the world training others in surgery of BPES and has obviously a long history of dealing with BPES. Shireen may have details, if you would like to contact him. I think it works that you get a referral from your GP, but I would ask Shireen she knows all this stuff. Good luck and I look forward maybe to meeting you at our next London get together? Clare Caroline Obbard <caroline.obbard@...> wrote: Hi my son Todd who is

now 3 1/2 years was born with "strange" eyes. nobody ever told us there was anything really wrong, until at about 6 months he was referred to a paed. who still didn't know what was wrong so refered on to optomertrist who diagnosed bilateral ptosis. we were seen by a consultant who confirmed this and ever since Todd has had sight checks every 6 months. (which have now revealed his need for spectacles which he is refusing to wear! though we have been told that this prob nothing to do with his condition and he would have needed them anyway) I decided to try and find out more on the internet and discovered that ptosis isn't the end of the story. we have pushed to see another doctor who confirmed that it is BPES. we now have some sort of promise for genetic testing, as he is the only person in either family to have it. we have 2 other boys aged 11 & 8 who are unaffected. I seem to see alot on the internet about

corrective surgery but at present we are told that Todd doesn't need it - he lifts his brow and tilts his chin when necessary. any surgery would be cosmetic. I am so glad we've found this group and maybe finally we are getting somewhere with the diagnosis of his condition.btw we live in Ashford, kent, England and all the "specialists" we have seen are at our local hospital

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