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General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

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JuliaF
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Posts: 16
Joined: Sat 16 Jan 2010 8:28 pm
Keratoconus: No, I don't suffer from KC

Facebook

Postby JuliaF » Mon 18 Jan 2010 4:17 pm

Hi,
I just did a search on facebook to link with this self help group but can't find a page for this one. There are several others on there.... just wondered if this group has any plans on using facebook?

Thanks

Julia :)
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Andrew MacLean
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Facebook

Postby Andrew MacLean » Tue 19 Jan 2010 9:24 am

Julia

Quite a lot of us have facebook accounts, and there is a link to this site from my profile.

I wonder whether John has any plans to develop a facebook 'fanpage' that links to the forum?

Andrew
Andrew MacLean
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JuliaF
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Posts: 16
Joined: Sat 16 Jan 2010 8:28 pm
Keratoconus: No, I don't suffer from KC

Re: Facebook

Postby JuliaF » Tue 19 Jan 2010 11:09 am

Thanks Andrew - I ask for two reasons really. Firstly I understand as a group you are dedicated to raising the profile of this condition so that may be a 'quick win' getting exposure to a larger audience on facebook.

Secondly as KC afflicts a large proportion of relative youngsters, a good proportion of them are active on Facebook and very 'social network site savvy' (this includes my son ;)) so it could lead to a higher membership of this group as it is more accessible to them.

I note my son has already linked his profile to a Kerataconus support group on facebook, but (obviously) not this one! Just random thoughts :)
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Charlottes mum
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Posts: 139
Joined: Tue 24 Nov 2009 5:14 pm
Keratoconus: No, I don't suffer from KC
Vision: I don't have KC

Re: Facebook

Postby Charlottes mum » Tue 19 Jan 2010 6:04 pm

Hi. I use facebook too so I have just put a link to this site from my facebook page. I hope friends will find their way here and read up on KC which affects my 17yr old daughter, Charlotte. I hope this is ok and doesn't go against any of the T&C on here? If so I will remove it asap. Thanks. Angie4Char
"Promise me you'll always remember that you're braver than you believe, you are stronger than you seem and smarter than you think" .....Winnie the Pooh
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space_cadet
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Joined: Tue 12 May 2009 11:46 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Leeds
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Re: Facebook

Postby space_cadet » Sun 24 Jan 2010 9:18 pm

I am fairly easy to find on facebook as only person with my name, feel free to Private message me and i wil llet you know my full name...

there is a very good KC group on facebook which i have been a member of for nearly a year now...

lea
x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world
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Sweet
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Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Re: Facebook

Postby Sweet » Mon 25 Jan 2010 2:00 pm

I have added a link to us on my facebook page and it was noticed by a school friend of mine who I didn't know had KC! She is now a member here.

It is a good idea as young people especially will find us easier. You are more than welcome to add a link to us!

Love Claire X x X
Sweet X x X

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