R: Hi to all BPES friends !

[Guest guest]

Dear Shireen and Emalee,

thank you for your exhaustive and very helpful answer and sorry for my delay.

I do agree that "there is no substitute for professional advice" (I am a Doctor !) but sharing experiences can truly help parents to decide. In you letter you mention "the top 5 plastic suregeons in the world" : could you please tell me who are the others ?

Thank you again and.... ciao !

Giro (from Italy)

Da: blepharophimosis [mailto:blepharophimosis ] Per conto di Shireen MohandesInviato: martedì 8 aprile 2008 9.03A: blepharophimosis Oggetto: RE: blepharophimosis Hi to all BPES friends !

Dear Giro

In answer to your questions:

Firstly – there is no substitute for professional advice. Hearing about other people’s experiences is helpful, but it should be considered as a shared experiences rather than a recommendation for a treatment option.

Secondly – we are all very different. Some little babies need urgent attention because of the severity of the condition. Other children can wait till they are older, as benefits for them, and the treatment option for an older child is different.

Your question

So I would ask you this: in your experience, does the sight effectively improve after surgery ?

Asking us is asking the wrong person. The improvement for very young babies is difficult for a parent to measure, because young babies are lesser able to communicate. Many of the people who undergo surgery are young, and some older. However, the experience of parents and carers is certainly very important. So a medical person does the eye checks to see if vision is less impaired, and a parent can provide feedback on behaviour. You will hear from parents on this group – but only a medic can give you the scientific reason for why the surgery improves the vision, and even then, it will be specific for your little Carlo. (I am sure you appreciate this … but I feel I should mention it because it is important to emphasise the balance between people’s experience, and professional opinion).

Your question

Could sight improve over the years even without surgery (glasses, contact lens or else) ?

This is a question for a specialist.

Your question

One more question: after surgery, will eyes close in a correct fashion or will they remain "semiclosed" ?

This is a question for a specialist. There are several techniques, each of us is different. So it depends on the person and the treatment provided. I can tell you that for me my eyes are slightly open – but you should not pay any attention to that! I was first operated on in 1963!!! Things have changed so much since then. Nowadays for some people the surgery is a day in hospital, and go home at the end of the day. For me, I was in hospital for 2 weeks.

Is there any picture in "our" website of kids who had surgery from Dr. Yassir M S Abou-Rayyah or Mr Collin ?

There are many many people who have been treated by Mr Collin. He is one of the top 5 ocular plastic surgeons in the world.

Take a look at the database section on the site, you can see then names of the doctors, and then you can look at the folders with the pictures. But please remember – each of us is different. Mr Abou-Rayyah has been seen by many people here too. I am told that he worked very closely with Mr Colin. Try searching for his name in this site and you can see the relevant posts. I have met 2 young girls who had surgery performed by him – the result is amazing.

I really hope you find some answers, and a good doctor to help you decide the best treatment options.

Take care

Shireen Mohandes

London England

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of girodocSent: 06 April 2008 16:14blepharophimosis Subject: blepharophimosis Hi to all BPES friends !

Dear Friends,my 3 yrs old son Carlo inherited BPES from me. Now I'm 46 and I never had surgery. Recently, in routine control, my son was found to be 4/10 in the left eye and 8/10 in the right one.Surgery, then, should be performed more for a "functional" reason than for a "cosmetic" reason.So I would ask you this: in your experience, does the sight effectively improve after surgery ? Could sight improve over the years even without surgery (glasses, contact lens or else) ?One more question: after surgery, will eyes close in a correct fashion or will they remain "semiclosed" ?Is there any picture in "our" website of kids who had surgery from Dr. Yassir M S Abou-Rayyah or Mr Collin ?Thank you very much for your help and… keep in touch !Giro from Italy

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