Helen

Sclero support group

8 posts in this topic

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

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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

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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:

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Hi Helen,

 

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

 

Many thanks

Summer

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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:

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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

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Hi Andyko,

 

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

 

Many thanks

 

summer :thank-you:

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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

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International Scleroderma Network (ISN)

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