London get together

[Guest guest]

Hello Anita, and all else who have recently joined this fabulous site. My daughter and I are going to the 'get together' Shireen has organised in London in December, it was excellent last time, really interesting to meet so many people after spending so many years thinking i would very rarely meet anyone that looked like me! My daughter Emy who is now 10 enjoyed it too, its probably the same for her, and she enjoys showing her eyes to people who understand. So if you are thinking of popping in, excellent see you there, if not then maybe one day..... Keep talking its fantastic to hear all the news from everyone and a huge support for all. Thank you. Regards Clare and Emy, Hertfordshire, UKbirrellnadine <birrellnadine@...> wrote: Hi AnitaI agree with you, clare and shireen about how important this research is. I was not aware of this until your recent posting about taking part as I only joined recently. I have emailed Hardy, I hope it's the right email address and I hope it's not too late, if he's returning in Jan 2006. I would encourage other adult females with BPES who have joined recently to find out more. When I find out anything, I'll let everyone know. take care for now, Duncan> > Hi everyone> > Some of you may have read an earlier post on this topic, but for > those of you who are

new, I will start from scratch.> > > > Moorfields Eye Hospital in London England are conducting a study > on BPES and infertility. Previously, they were only able to see > people who are, or were, patients of the hospital. It turns out that > they don't have enough people, and so they are extending the study. > (Just to be clear, this is only a potential problem for > females.There is no known association between infertility and BPES > in males).> > > > What type people do they need?> > Females, aged 18+, who have BPES> > > > Can anyone participate?> > Yes, you don't have to be from the UK. There is a small travel > budget. For example, the equivalent of a "return train ticket". > > > > Arranging the consultation. How does that happen?> > They sent me a long letter, explaining what

is needed, why they > are doing the study. I then filled out a short form and sent it > back, saying that I was happy to participate. Then they sent me even > more information.> > > > What is involved?> > I had a consultation with the person running the study, a very > nice specialist from New Zealand, who is working for the Mr Collin > (whom we have all heard of, and who has done some wonderful work on > people with BPES)> > > > When I went along, I spent about 30-40 minutes being examined by > him. I had plenty of time to ask questions.> > Then I gave a small sample of blood.> > > > After my meeting at Moorfields, (which happened not to be on the > same day, but I guess could have been) I visited a specialist at > Guy's hospital. The specialist is female, and an expert in assisted > fertility.

> > > > > > Why participate?> > This is a great opportunity to be seen at Moorfields Eye Hospital. > I know there are many very good hospitals all around the world. But > in my opinion, it would be a good chance for people to get seen by > somebody who has met so many people with BPES, and to get some > advice, and have some questions answered.> > > > I really cannot stress how friendly both specialists were. When I > told them that we have a group, they were very pleased to > learn that our group may be able to help them to find more > participants. Also, I think that if as a group we establish a good > relationship with these people, then they are likely to share their > findings with us, answer any questions, and for people who live fare > away, assist in recommending specialist care

providers.> > > > So - if you are thinking of participating - what do you do next?> > > > 1. You can ask me some more questions, I will be happy to help out> > 2. You can contact the person running the study directly > Hardy: hardy_thomas@b... > > > > Just so that I get some idea of how much progress in contributing, > it would be nice if you let me know - but I respect your privacy if > you want to keep that to yourself.> > > > What if I am thinking of participating, but accommodation in > London is a problem?> > Please let me know, and I will try to help you sort something out.> > > > Shireen Mohandes> > London, England> > > > > > > > To Post a

message, send it to: blepharophimosis@e...> > > > To Unsubscribe, send a blank message to: blepharophimosis-> unsubscribe@e... > > > > > > > > ---------------------------------> >

[Guest guest]

Hi Shireen

Havent thought that far ahead. The 18th sounds like a good date!!

Cherio

Joyce

London England

[Guest guest]

Hi, what an excellent idea.

Both dates are great for us at the moment.

Looking forward to it already.

Clare Herts UK

From: Shireen Mohandes <shireen@...>Subject: blepharophimosis London Get togetherblepharophimosis Date: Monday, November 3, 2008, 2:30 PM

Hi all

It has been a while since we last got together …. Am thinking of arranging another.

How about early in January? Sunday 11th or 18th?

Please let me know what you think.

Regards

Shireen Mohandes

London, England

[Guest guest]

Jaym this is really odd that you are on this website, this is Karla Mesman ( Russo) and I am not sure if you remember me, but I use to date your brother ?? I think this is you! The crazy thing is that I often wondered if you had BPES and wanted to somehow contact you to see if this is actually what was medically diagnosed with your eyes. I have a son Marcus who has BPES, he is my second son and he is an awesome child. When he was born they told me that he would have to have surgery and I was devastated, but he is 7 years old now and has had 2 surgeries, first 1 was at the age of 1 and the second one was just this past summer in June. We have seen wonderful doctors here in Grand Rapids and they are the ones that did our son's surgeries. Let me know if

you are interested in talking to me any further. I know this is really really strange but as soon as I seen your name on here, I knew it was you!

Karla Mesman

Hudsonville MI

PS pictures of my son is under Photos Marcus

Re: blepharophimosis London Get together

Hello,

This is Jaym Abraham I have BPES as well. I am 31 years old ann have a daughter that also has our condition. I really am hoping that you can tell me the doctors or the hospital that has done your surgery. I understand that you live in london and me in the states. That would not stop my wife and I in making the trip. Please help!!

Jaym Abraham

Teacher