RE: Blood Test to Determine Type 1 or 2

[Guest guest]

--- In blepharophimosis , " natalie " <papierpuppe@...>

wrote:

>

> Hi I'm , I attended the gathering arranged by Shireen last

> weekend. It was lovely to meet everyone there and compare

> experiences. I spoke to many people and found out that you can

find

> out if you are type 1 or 2 with a simple blood test, and was told

that

> if i posted here i would get a horde of replies with information

about

> how to go about it. If anyone knows anything, i would really

> appreciate hearing from you.

>

> Many thanks,

>

> , London, UK

>

hi nat , can they do the test at any local hosp or just moorfields as

per normal my local hosp dosnt know too much about this and i feel i

know more then they do , so i will have to tell the docs in my local

hosp what to do , any info would be good , thanks scott

[Guest guest]

Hi

My suggestion to you is, seeing as you live in London, UK, you might

like to ask your GP to refer you to Genetics Counselling.

When you go to see your GP take along a copy of this article:

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

And say that you want to learn more, and have testing carried

out.

This article will provide your GP with the information that’s

needed to persuade him/her to refer you, and will help your consultation with

your GP to be successful.

I hope this helps.

Take care

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of natalie

Sent: 19 January 2008 16:49

blepharophimosis

Subject: blepharophimosis Blood Test to Determine Type 1 or 2

Hi I'm , I attended the gathering

arranged by Shireen last

weekend. It was lovely to meet everyone there and compare

experiences. I spoke to many people and found out that you can find

out if you are type 1 or 2 with a simple blood test, and was told that

if i posted here i would get a horde of replies with information about

how to go about it. If anyone knows anything, i would really

appreciate hearing from you.

Many thanks,

, London, UK

[Guest guest]

Hi , its Clare and Emy from Hertfordshire. It was truly lovely to meet you the other Sunday, I think you were very brave to come in at the last minute. It really helped Emy to see someone older, but still someone she can relate to, so thank you for sharing. It was excellent to meet your family too. I have an old e-mail from Joyce (she was there too, with her two beautiful daughters) with details of how she got in contact for testing, I will paste it below, I am sure she wont mind me mailing details again. I spose it depends where you live. Any questions, please feel free to ask. Love and stuff Clare and Emy - Herts UK "I got a referal from my GP to NHS

South West Thames Regional Genetics Service. We were seen in ST 's University of London. Cranmer Terrace. SW17 0RE Tel 02087255293/ 5297 (Admin unit) The Consultant is Professor A Patton. A very nice man and has quite extensive experience in BPES. website WWW.genetics- swt.org " natalie <papierpuppe@...> wrote: Hi I'm , I attended the gathering arranged by Shireen last weekend. It was lovely to meet everyone there and compare experiences. I spoke to many people and found out that you can find out if you are type 1 or 2 with a simple blood test, and was told that if i posted here i would get a horde of replies with information about how to go about it. If anyone knows anything, i would really appreciate hearing from you.Many thanks,, London, UKClare Teale www.talking-spirit.moonfruit.com 07776 481481

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