NEED SUPPORT SYSTEM FOR GRANDAUGHTER WITH PTOSIS

[Guest guest]

PLEASE HELP WITH ANY INFO ON EYE SURGERY. I AM VERY NEW AT THIS AND

NEED TO KNOW WHEN THE TIME IS RIGHT FOR SURGERY, DRS ARE SUGGESTING TO

HOLD OFF UNTIL 5. SHE HAS PTOSIS IN ONE EYE ONLY.... PLEASE HELP US

UNDERSTAND THE PROS AND CONS OF EARLY SURGERY SHE IS 16 MONTHS OLD.

[Guest guest]

Hi (I am sorry but I don't know what your name is)

Welcome to our group. Without any doubt, the best advice you can get is from a paediatrician and an ocular plastic surgeon. None of us can possible better, or even come come anywhere near, advising you on the ideal time for surgery.

There are some items of information that may help you understand more about BPES, and the Blepharophimosis, Ptosis and Epicanthus.Inversus.

Most, but not all, of the people in this group tend to have Blepharophimosis, Ptosis and Epicanthus.Inversus. So when you see posts or emails, they tend to be people or parents talking about surgery (especially the age at which it takes place) that is aimed to help with not just ptosis, maybe other things too. So, whilst it may be interesting to read these accounts, it would be unwise to base a decision on people's experiences.

Another thing is quite apparent - even though there are more than 400 people who are part of this group, very few of us are the same. In some cases the severity is high, in others very mild. So, it would not make sense to assume what applies to one person will apply to another.

A good source of information is here:

http://www.emedicine.com/ent/topic97.htm

This site is very respectable and discusses all the different types of ptosis, along with quite detailed information about surgery.

You may like to take a look at this site (although this site is primarily for BPES):

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

Especially have a look at the section called: "Management", and "Treatment of Manifestations".

I hope that you have a good team of heath advisers, and that you are confident in their ability to help you.

take care

Shireen

London, England.

(I am 45 years old, I have BPES, and I am the only person in my family with BPES)

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of hlnivorySent: 02 August 2006 19:24blepharophimosis Subject: blepharophimosis NEED SUPPORT SYSTEM FOR GRANDAUGHTER WITH PTOSIS

PLEASE HELP WITH ANY INFO ON EYE SURGERY. I AM VERY NEW AT THIS AND NEED TO KNOW WHEN THE TIME IS RIGHT FOR SURGERY, DRS ARE SUGGESTING TO HOLD OFF UNTIL 5. SHE HAS PTOSIS IN ONE EYE ONLY.... PLEASE HELP US UNDERSTAND THE PROS AND CONS OF EARLY SURGERY SHE IS 16 MONTHS OLD.