Re: interested in meeting families with blepharophimosis in uk

[Guest guest]

Hi Therese

My daughter, Kirsten (4yrs) has BPES and sees Mr Collin. He has done

2 ops so far on her eyes and we have been thrilled with the results.

The good news is that time is on your side and you don't need to

rush into any decision unless Esme's vision is affected. Mr Collin

is the most experienced surgeon for BPES in the UK.

I would love to meet up with you. We will be in London for Kirsten's

third and final op in Sept/ Oct and we are moving to Colchester this

summer. Not exactly on your doorstep, I know.

Best regards

Parsons

Harrogate (UK)

>

> Hi my name is Therese I have a 2 year old daughter called Esme

with

> blepharophimosis.So far she has not had any operations. We have

seen

> Mr R (MoorFields)andhe has advised that it would be worth

> having the sling operation. I currently tape her lids up with

> steristrips and feel quite apprehensive about the op and how it

seems

> to totally change ones appearance plus the scarring and operated

> look.At the moment she looks really fine albeit unusual and her

vision

> which is checked every couple of months seems to be developing

well

> although slightly long sighted.

> I would love to meet other families in the same boat and any that

have

> had the operation.

> we live in Tiverton Devon and are happy to travel anywhere in the

uk

> Also are there any annual gettogethers happening this year in

Britain?

>

> Therese

>

[Guest guest]

Hi

Thanks for your email. Its so good to have feedback about a surgeon

as the thought of letting Esme have the operation has been a

constant worry. What operations has kirsten had and how old was she

when she had her first operation.

we would be so very happy to meet you and kirsten.When do you have

time?

Probably not a good idea just before Kirsten's surgery but perhaps

in August we could meet up. We are due to meet Mr in

September too to make plans for a sling operation.There's also

another surgeon by the name of Palmer who we've been seeing. He

works in the south West (Exeter) and he is a pioneer of not using

the leg tissue or the sling rods but basically he solves the eye lid

problem by attaching the lid directly to the frontalis muscle which

he pulls down and attaches to the lid. He says this is the new

method that the Doctors in China have been using and he has been

working along side them.It also removes the need to redo the

operation later with facie tissue from the leg as the operation is a

permanent one. I thought I'd seek Mr opinion on this method

and find out whether he performs the same operation.

please call me for a chat on 01398 33 22 99

all our best wishes

Therese & Esme

[Guest guest]

Hi Therese My name is Lucy and my husband Garry and I have a daughter aged 2 and a half who has BPES. Holly is our first child and is the first in the family to have this. It was a big shock to us when Holly was diagnosed aged 4 months but from this support group it has really helped us. We have attended three get togethers, which have been priceless and we are also looked after at Moorfields Eye Hospital with Mr Collin. We live in Hampshire, UK near Portsmouth. If you are ever down our way give me a shout and we can meet up. It really helps to meet other people with the same condition especially seeing the teenagers that have had the operations and look fantastic! Holly had her first eye lift last Septmber and we haven't looked back since. She is due two more operations in the future. If you have any more questions please fire away. Lucy xx (Hampshire, UK)theresedaniell <theresedaniell@...> wrote: Hi my name is Therese I have a 2 year old daughter called Esme with blepharophimosis.So far she has not had any operations. We have seen Mr R (MoorFields)andhe has advised that it would be worth having the sling operation. I currently tape her lids up with steristrips and feel quite apprehensive about the op and how it seems to totally change ones appearance plus the scarring and operated look.At the

moment she looks really fine albeit unusual and her vision which is checked every couple of months seems to be developing well although slightly long sighted.I would love to meet other families in the same boat and any that have had the operation.we live in Tiverton Devon and are happy to travel anywhere in the ukAlso are there any annual gettogethers happening this year in Britain?Therese

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[Guest guest]

Hi Therese Mr Collin will definitely have advice on different ways to do the lid lift. There never is only one way to do something, go with your gut instinct but get as much info as you can before making a final decision. I will call you this weekend for a chat. Take care Parsons Harrogate (UK)

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

Hi Therese, my name is Adrienne and I have a 3 month old with BPES. I

am new to the condition, but my husband has it. My husband's

treatment was many years ago, so we are both learning all the options

offered today. Your email was the first I've seen where steristrips

were mentioned. What exactly is this, and at what age did you start

doing this for your daughter? We have an appointment with our doctor

on Tuesday, and I would like to ask him about this. Does anyone else

have any input? Also, thanks so much to you all, I can't tell you how

much this website has helped me!

Adrienne

Sacramento, California

>

> Hi my name is Therese I have a 2 year old daughter called Esme with

> blepharophimosis.So far she has not had any operations. We have seen

> Mr R (MoorFields)andhe has advised that it would be worth

> having the sling operation. I currently tape her lids up with

> steristrips and feel quite apprehensive about the op and how it seems

> to totally change ones appearance plus the scarring and operated

> look.At the moment she looks really fine albeit unusual and her vision

> which is checked every couple of months seems to be developing well

> although slightly long sighted.

> I would love to meet other families in the same boat and any that have

> had the operation.

> we live in Tiverton Devon and are happy to travel anywhere in the uk

> Also are there any annual gettogethers happening this year in Britain?

>

> Therese

>