Re: Re: Message for Caroline and Neil

[Guest guest]

Hi Guys

I only just discovered Dr via this group. For over 10 years we were at the mercy of my GP and he referred us to our local hospital (Chelsea and Westminster) we saw the doctors there and they operated on my 1st daughter (a total disaster) They did not even once define the condition, after the 1st operation they called me in and said that there is nothing they can do, They even confirmed it in writing to me. They left her in scars. Basically they had never heard or dealt with the condition, they just experimented on her and left to cope with the scars.

We saw Dr last year he examined what our local dr had done and came to the same conclusion. They had no clue and very nearly ruined my daughters face.

Blepharophimosis is a specific syndrome and have some specific treatments, my local doc did not know any of this.

Because I have girls there is the issues of fertility (ie BPES type 1 or 2). No one mentioned this for the last 10 years. Local doc can be great for flus and stuff but for this go the the experts, even if is just consultation, dianosis and treatment options.

In the last group meeting we had we had people come all the way from Singapore. It is important.

Dr has experience in this area, (over 35 years). Before anyone starts poking about with Todd try and get him to see Dr or his team. Moorfield as you know is an eye hospital where they have every eye specialist plus this is not new to them unlike the 1st doctors I saw.

With regard to the way people react to the girls, it will be lie to say we didn't have looks, stares and people pointing fingers, but we just get on and don't let it get to us, there was a time when the girls hate to go to new places but I do my best to instil in them that they are beautiful and unique and people stare because of the uniqueness of their face.

As parents you are doing the right things Todd is beautiful,keep telling him everyday.

My youngest daughter is refusing surgery because she so loves herself the way she is, it wasn't always this way.

I will agree with all that say that as parents please and please never offer explanations to people, it has a negative effect on the children, parade them, never let them shrink away, there are benefits to be had.