Speak Up! Your Voice Matters.
Here's a summary of June's Scleroderma Awareness Month Survey:
Sixty-six percent of respondents first learned of the disease when they (40%) or a friend or family member (26%) were diagnosed. The primary takeaway from this statistic is that there is much work to be done to raise the profile of this disease. Increased awareness of scleroderma will result in a better understanding of disease complications, heightened interest from policymakers and drug companies as well as more funding for vital medical research. Fourteen percent of people first learned of scleroderma through Bob Saget's made-for-television movie, For Hope, about his sister's struggle with the disease, starring Dana Delany and featuring SRF Founder Sharon Monsky.
Almost half of all those responding (49%) know only one person with scleroderma, whether it be themselves or a friend/family member. This is to be expected since scleroderma is a rare disease. However, in a clear showing of how connected this community is becoming, nearly 26% now know more than 10 people with the disease.
As another example of how active the community is becoming, more than 32% of respondents met others with scleroderma online. Twenty-six percent met others at support group meetings. Nearly 12% met other patients through introductions by friends or family members and 6% have happened upon another patient in a public setting. The remaining respondents either haven't met anyone with scleroderma or they have met others at a fundraising or awareness-building activity like a Cure Crew event.
Answers to the question "What do you wish people knew about scleroderma?" were largely consistent with the following statement: "I wish more people knew about scleroderma; how it's much more than a skin disease, can be deadly and has changed my life in so many complicated ways." Demonstrating scleroderma's myriad symptoms, some people wish that others would not judge them by their affected appearance while others wished the opposite: that people understood despite limited change in physical attributes, the internal changes are extraordinary and debilitating.
Survey participants feel that the number one way to increase scleroderma awareness is through social media like Facebook, Twitter, Instagram and others. The next best methods, in order of anticipated success rate, are (2) educational events; (3) word of mouth; (4) advertising and fundraising events (tied); and (5) public service announcements on television or radio.
Most people asked that the SRF continue and to step up efforts to raise awareness by asking celebrities to be more involved, considering new advertising and public relations opportunities, finding new ways to put scleroderma "in the news" and continuing to distribute new information via every possible distribution channel. We're listening!
Lastly, we thank respondents for recognizing that they are a vital part of the solution. Increasing social media postings about scleroderma, bringing new people to the SRF website or Facebook page as well as hosting awareness and fundraising events in local communities are all excellent ways to expedite progress toward new therapies and a cure.
This month's poll: Coping with Scleroderma. What are the unique ways in which you cope with scleroderma symptoms? Share your response here. We'll share selected responses in next month's e-newsletter.