The Face of Scleroderma
Sharing Your Scleroderma Story with Others
One of the goals of the Michigan Chapter is to reach out and touch the lives of those who are afflicted with scleroderma. One way we are hoping to achieve this goal is to share the stories of those who are touched day to day by scleroderma. Whether you are a patient, family member or care giver, we understand that scleroderma can present challenges to your lives. It is our intent to share these stories in an attempt to create more awareness in the state of Michigan and in our advocacy efforts.
These stories we have learned also provide an immense amount of emotional support for patients and family members as they read about others lives and challenges, realizing that so much is learned from the experiences of others. There is HOPE in all of your stories and even in your challenges there are triumphs.
The Michigan Chapter would like YOU to share your experience with scleroderma, from the first doctor visit to where you are today. You don’t have to be an author to effectively write down your thoughts, you just need to share the emotions, the facts and most important what you feel is important for other scleroderma families to know.
 If you are struggling with starting to write your personal story or the story of someone you loved that had scleroderma, here are some beginning phases that might assist you with the process:
- I remember the first day the doctor told me I had scleroderma…
- Telling someone else that I had scleroderma was the hardest day because…
- Scleroderma has changed my life because…
- Scleroderma has enriched my life by…
- Even though scleroderma has changed my life I have found that…
- My family’s reaction to learning I had scleroderma was…
- I found it easiest to tell…..while I found it hardest to tell….that I had scleroderma
- I feel the biggest sense of loss of _____________in regard to having scleroderma
- Losing my_____________ to scleroderma impacted my life __________________
- Watching my ______________________ suffer with scleroderma has changed me in the following ways_______________________
- Even though scleroderma changed my ___________ life, the one thing that I noticed was________
- If I could share one thing with another family that is newly diagnosed with scleroderma it would be_____________________
Thank you for reaching out and taking the time to share your personal story. These stories will touch the lives of so many others and help to make a real difference. Providing HOPE is what the Michigan Chapter is all about and we appreciate you working hand in hand with us and enabling us to achieve our goal of support, education and research for all those who are affected by scleroderma.
E-mail your story to the Scleroderma Foundation Michigan at ldyas@scleroderma-mi.org |
