Please put your name and where you live in your posts

[Guest guest]

Dear members of the group, especially all the new people who

have joined recently (big warm welcome)

May I ask that you put your name, and where you live, in the

posts? This is enormously helpful – for three reasons.

First – there are more than 600 members in the group, many

share the same first name. (few people use their full name in their email

address, I don’t).

Second – when people look thru the old messages searching

for people or key words (like “deletion” or “trans nasal”)

and they retrieve a bunch of messages, it is difficult to work out who the

messages are from without seeing the names of the people at the bottom of the

post.

Third – it is very helpful for people to learn that

they are not alone. Knowing that there are others in New Zealand, Italy, Atlanta,

Ireland, etc. is a comforting feeling for many people – especially the parents

of little ones. The first time I came across somebody else with BPES was in the

1980s when rather surprisingly learnt that my roommate’s friend (

Teale) also has BPES. was abroad at the time, I never got round to

meeting her, so instead I spoke on the phone to her mother. I did not meet her until

just a few years ago, via this group. Anyway – in the 80s – as we

all know – no Internet. Simply knowing that I was not the only person in

London with BPES was helpful to me.

Many thanks

Shireen Mohandes

London, England