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KayTee

Out of the Sclero Closet

4 posts in this topic

Hi everyone:

I was at the hospital in San Francisco for a pulmonary appointment when I noticed a brochure about a fund-raiser sponsored by a local scleroderma chapter. I was stunned. This was the first time I had ever seen a public fundraiser run/walk for scleroderma. I signed up, linked to the page, went on FB and for the first time 'announced' I had scleroderma and was going to participate in the walk. Although my family and close friends know about it, I haven't generally let people know I have this chronic disease. When I had breast cancer it was fairly easy for people to understand what was going on and decide if they wished to donate or participate in events and organizations. Scleroderma is a different, more complicated beast in many ways. Within hours some friends had donated and sent messages. How wonderful - and thanks for ISN always being there whether the closet door is open or not.


Kay Tee

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Hello KayTee

 

Congratulations on "outting" yourself!

 

Yep, unless there are obvious signs that there is something wrong with you it's difficult to communicate chronic illness to people. Having done so you do wonder how people will react and so far they seem to be doing well in supporting you. Good on you for joining in fundraising and awareness raising for scleroderma!

 

Thank you for being a member of ISN and taking the time to post and support other members with your replies.

 

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)

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Hi Kay Tee,

 

Good for you for 'coming out' and joining up for the walk to raise awareness for Scleroderma! :emoticon-congratulations:

 

Amanda's right; because Scleroderma is such an uncommon disease it's very difficult to explain to the average person about the intricacies of it and anything that can help to make it more understandable for family and friends is an excellent idea!

 

I'm joining Amanda in thanking you for being such a valued member of our community! :thank-you:

 

Kind regards,


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)

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Hi Everyone,

 

Just this past Saturday afternoon, someone asked me what was wrong with Gareth? He was participating in a Special Olypmics Tennis clinic and kept kneeling down on one knee with his hands/chin on the racket handle to support himself. You could tell he was tired but he insisted on staying. At first, I told the lady he had autoimmune *issues* and got tired easily. When she pressed on as to *what is that*, I tried to explain Scleroderma, too. It's amazing that many people don't even know that Rheumatoid Arthritis is an autoimmune disease and how they can all zap your strenght/energy. I guess if we all tell one person, at a time, people will soon learn more about autoimmune diseases.

 

Take care, Everyone.

Margaret

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