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Robyn Sims

World Scleroderma Day

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Hello all,

 

Australia has for the past two years joined with many countries around the world to raise awareness of scleroderma through this special day. June 29 was chosen in recognition of Paul Klee, a gifted Swiss artist, who passed away on this day in 1948.

 

His painting titled "Kettledrummer" was chosen for brochures to use for this day. His art work was strongly influenced by his illness, systemic scleroderma.

 

Around Australia many events have been prepared to highlight this special day.

 

We hope our efforts go some way to helping to raise awareness :emoticons-group-hug:

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The International Scleroderma Network (ISN) also celebrates the World Scleroderma Day, thanks to the enthusiasm and influence of our Australian affiliate. (Thank you, Robyn!)

 

Mark June 29th on your calendar, for a virtual party in Sclero Forums to celebrate this special day.

 

:emoticons-line-dance:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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:emoticons-line-dance: Today, in celebration of World Scleroderma Day, I have posted it as my status on a social network and am wearing my scleroderma awareness bracelet. :emoticons-line-dance:

 

I am grateful for all of the support I have found on this forum and the courage and sense of humor you have shown in dealing with this disease. :emoticons-group-hug:

I am celebrating at my favorite place, the beach (who would ever guess that of me?) because I am still alive after 7 years since diagnosis in spite of kidney failure and transplant, interstitial lung disease, Stage 2 heart failure, GI damage, limited mobility, and the emotional ups and downs that happen between what the disease and the side effects of the medicines taken to treat the symptoms of the disease bring.

 

There is no cure for scleroderma and until recently very little research was funded to find a cure. That is slowly changing and trials are being done world wide to find ways to if not cure at least stop the often rapid progression. Thank you to all of you who have participated in a trial, because of my kidney damage I do not qualify for any. Know that you are helping others. :emoticons-thankyou:

 

miocean

 

Do something today for yourself to celebrate in whatever capacity you can. Hug your loved ones, eat that piece of chocolate, take that bubble bath.

 

Be strong, all my fellow sclerodermians. Do something today to celebrate. If I could drink I would toast you all!


ISN Artist

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Hi to all those involved with Scleroderma on this special day, whether it be those with the diagnosis, those who love them, those who care for and support them, or those who want to know more.

 

I have been wearing a blue ribbon Scleroderma T-shirt to celebrate and spread the word.

 

I agree Miocean that the beach is a perfect place for you to rejoice in your courage, persistence and the opportunity you have to live each day. You words inspire me to do likewise. (Unfortunately down south I am forced to look over the farm dam and try to visualise the waves, but you get the idea)

 

Love to all on this special day and for the days to follow.

 

Tara :happy-day:

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