Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Sclero support group


  • Please log in to reply
7 replies to this topic

#1 Helen

Helen

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Australia

Posted 15 August 2010 - 01:30 AM

Hi Everyone

We have started a support group in our town. There are about six regulars who get together for coffee every second month. At the moment it is just good to talk to other people with Scleroderma. I was just wondering what sort of things other support groups do. We don't really know how to help each other, we just share our experiences.

Grateful for any ideas.

Helen

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 15 August 2010 - 09:32 AM

Hello Helen

I've been running a support group in Essex for the Scleroderma Society now for about a 1 1/2 to 2 years. We meet 4 times a year, I provide a buffet and we eat, talk, eat laugh, and oh yes eat! Our group is informal which suits everyone in it and how/what you do with your group is really led by the members. Some groups have guest speakers and presentations but venue would play a part in that.

I don't know if you're linked to any scleroderma organisation because if you are you could always talk to other group leaders for ideas.

Take the pressure off yourself because there's no demand on you to do anything particular, the fact that you've set the group up is terrific and I don't doubt your members think so too. Why not talk to the members and ask them what they're expecting, I've keep meaning to do that every time my group meets but never get round to it, too much talking and oh yes did I mention the eating?

Oh yes there's no "just" about sharing experiences, it's an integral part of meeting together. When initially diagnosed being able to hear the experience of another was worth its weight in gold to me. My final comment is that through running the group I have met marvelous people and I consider the regulars to be friends.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 Helen

Helen

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Australia

Posted 15 August 2010 - 10:52 AM

Thanks Amanda

I didn't start the group, another lady who has Morphea but is in remission started it. I would never have the energy to do it. She asked me if maybe we should be doing something other than talking over coffee, but as most of the others are not that well I said we are probably happy with just talking with others with the same disease...I know I am.

Even though family & friends care and worry it's not the same as being able to talk to other scleros.

I have been especially helped by one lady who has Diffuse, like me, (we are the only 2 with Diffuse) she got it when she was 50 as I did and now she is 84...I must say I was really happy to meet her :emoticons-yes: She has given me lots of useful tips as well.

I am off to my meeting today.

Thanks again Amanda :thank-you:

#4 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 15 August 2010 - 05:55 PM

Hi Helen,

Is your suport group in Melbourne, if so, what suburb?.

Many thanks
Summer

#5 Piper

Piper

    Silver Member

  • Members
  • PipPipPipPip
  • 140 posts
  • Location:Canada

Posted 16 August 2010 - 03:30 AM

Hi Helen, I attend a fibro support group. As I don't have a definite diagnosis I wouldn't feel comfortable attending a scleroderma group yet but I also have fibro so I go there.
We meet in a resteraunt for lunch once a month. Mostly it's a day out as no one in the group feels up to doing much more. One member researches and brings in all the latest news on fibro and we all commiserate with each other. I really look forward to it. There are several in the group who are also dealing with more than fibro.
Hugs, Piper :flowers:

#6 Helen

Helen

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Australia

Posted 16 August 2010 - 10:22 PM

Sorry Summer & Andrea I live in Rockhampton, Queensland.
I hope you find one in Melbourne...you would think there would be a lot more people with Scleroderma there as the population is a lot bigger.
Piper, I wouldn't think a sclero group would mind if you attended...from what I've seen of other people with Scleroderma and the ones on this site they are all happy to help each other out.

Best wishes

Helen

#7 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 17 August 2010 - 06:14 PM

Hi Andyko,

Yes, if you could PM the details, I would be most greatful.

Many thanks

summer :thank-you:

#8 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 18 August 2010 - 01:18 AM

Hi Helen

I've recently become the joint local contact for the West Sussex group of the Scleroderma Society and we had our first meet last June. I was a little bit worried that nobody would come but it was actually very successful with an excellent attendance (one member came with her entire family including great grandmother and seven week old baby!!! :VeryHappy: )

When I was first diagnosed I was very curious to meet other people with the disease as it is so unusual and the support group has been a great help. I've also met some really lovely people through it. :VeryHappy:

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)