Ectodermal Dysplasia
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A Meeting Place For People With ED!
 
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 Come on people!!!

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sarahcrosby2

sarahcrosby2


Female
Number of posts : 49
Age : 56
Location : watford
Age : 38
Registration date : 2006-07-22

Come on people!!! Empty
PostSubject: Come on people!!!   Come on people!!! EmptySat 19 May 2007 - 12:53

I got the email telling us that if we don't use it we will lose it!
Come on everyone - this is a great forum for us to talk about ourselves and our issues with like minded people - far better I feel than any conference I've been on!!
Come on!!!!!
talk to me people!!!!
Sx
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http://www.myspace.com/sarahcrosby
Heila Butters

Heila Butters


Female
Number of posts : 10
Age : 54
Location : Bloemfontein, South Africa
Age : 37
Registration date : 2006-11-20

Come on people!!! Empty
PostSubject: Re: Come on people!!!   Come on people!!! EmptyMon 21 May 2007 - 11:35

I feel exactly the same. Don't give up on it yet - it is still in its infancy.

I have a suggestion to make. I only seem to get e-mails telling me when someone replies or comments to my post, I dont get much else. I also don't get many or sometimes any replies - like the one of Polygam.

If we are registered with the forum, can't we automatically receive the newsletter? If we can - I don't get it. We are more likely to react if we receive an e-mail. I certainly don't log onto the forum daily unless I know there is something new on my specific interest.

We also need to let people know about the forum - send e-mails with the links to related organisations and friends - like the USA's National Foundation for ED. Contact them and ask if they will put a link to the forum on their web site.

I am going to try it with one here in South Africa - see if you find it....

Come on!!!! Lets do this

Kind regards
Heila
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sarahcrosby2

sarahcrosby2


Female
Number of posts : 49
Age : 56
Location : watford
Age : 38
Registration date : 2006-07-22

Come on people!!! Empty
PostSubject: Re: Come on people!!!   Come on people!!! EmptyMon 21 May 2007 - 20:02

I agree - I only go on the forum if I get an email telling me I've had a replly from a posting - so email would be great!
Also i tried sending links to this forum, to various hospitals etc but it either didn't get permission or it didn't work!! Let us know how you get on in Africa! (bet its warm where you are - ruddy freezing here!)
Nice to meet you!
sx
Heila Butters wrote:
I feel exactly the same. Don't give up on it yet - it is still in its infancy.

I have a suggestion to make. I only seem to get e-mails telling me when someone replies or comments to my post, I dont get much else. I also don't get many or sometimes any replies - like the one of Polygam.

If we are registered with the forum, can't we automatically receive the newsletter? If we can - I don't get it. We are more likely to react if we receive an e-mail. I certainly don't log onto the forum daily unless I know there is something new on my specific interest.

We also need to let people know about the forum - send e-mails with the links to related organisations and friends - like the USA's National Foundation for ED. Contact them and ask if they will put a link to the forum on their web site.

I am going to try it with one here in South Africa - see if you find it....

Come on!!!! Lets do this

Kind regards
Heila
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http://www.myspace.com/sarahcrosby
burden




Female
Number of posts : 25
Age : 53
Location : Canterbury
Age : 37
Registration date : 2006-04-26

Come on people!!! Empty
PostSubject: Re: Come on people!!!   Come on people!!! EmptyFri 25 May 2007 - 11:26

I'm still here too! I don't want the forums to go away either, knowing that it is there is helpful. It's a practical and easy route to information and experience that is invaluable. If I have any issue with ED I am far more likely to log on here and ask others with experience than I am to go to my GP, who quite frankly looks at me like I fell off a Christmas tree when I mention anything about ED as he either doesn't know or really doesn't care what my problem is. And fortunatelythe ED going on in my house doesn't have really serious implications, so the sort of advice I am likely to want would't warrant me going to the GP anyway. Please keep the forums!

there aren't that many of us I know, but it can only get more...?!
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