During 2011, we are looking to give Scleroderma one of its strongest “voices” to date. Yours. 
For those who have been suffering with Scleroderma, for family members and friends who support us, and for those who have lost family members to this silent predator, we are asking you to share your stories. We know there is terrible tragedy. We know there is hope. We know that lives – those affected and those who love them - are forever changed by this disease…emotionally, physically, financially. This year, aside from the economy and any other challenge, we want our voice to make a difference.
On our agenda this year, we are looking to be more proactive with advocacy and legislation. We want to increase media attention and donations to help support research that, if it cannot get us closer to a cure, will at least help to make life more manageable with improved treatment programs.
By sharing our stories of struggle, hope and treatments, we believe great support will follow. More important, it can also provide critical emotional support to others like us who are trying to find answers and more.
Click here to share your story as an email or Word document.
Thank you for giving your voice, sharing your story to make scleroderma known outside of our world. Increase awareness in pursuit of a cure.
Having difficulty writing your story? Maybe it might be easier to use some simple starter phrases like:
- Before I knew I had scleroderma, my life was…(discuss the type of life you were living from your career to activities, etc.)
- My life began to change when…
- When I was finally diagnosed, I thought…
- Even though Scleroderma makes me [how it challenges you], I’m inspired because…
- Living with scleroderma…
- [For those who have lost family members] Our lives were forever changed by Scleroderma because it took the future memories and laughter we would have shared with [person’s name]. [Person’s name] was amazing because…
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