Advocates on Steps of Congress 2013
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New Scleroderma Awareness Video Focuses on a Patient's Perspective

From the Spring 2013 Issue of the Scleroderma Voice

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Barry Sanders taped his segment for the new awareness video at the practice facility for the Detroit Lions. In the video, the former NFL and college football star, shared the story of his sister Nancy who passed away from the disease when she was 26. “Scleroderma devastated my family and left us with so many unanswered questions. I wish more research was being done to end the suffering from this disease.”

A recently produced patient-focused video has been more than four years in the making and a labor of love for one Scleroderma Foundation leader. When Laura Dyas started in her role as Executive Director for the Michigan Chapter, she realized that the current public awareness video for the Foundation didn’t completely express the views from a patient’s perspective. Year after year, she approached the Chapter’s Board asking for funding to help produce a new video that captured the compelling and emotional stories of people living with scleroderma.

Finally, Laura came to a realization: one chapter alone could not fund this project. She went to her Board of Directors with a new concept – pulling together as many of the Foundation chapters as possible in order to finance and produce the project.

Earlier this year, Laura’s dream and hard work finally paid off when a new 10-minute scleroderma awareness video was completed. The video features the stories of several scleroderma patients from the Michigan area. It also features the stories of some well-known celebrities, including football icon Barry Sanders, TV stars Jason Alexander and Mark Teich, and author Mitch Albom.

Telling Their Stories

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Connie Pulver shared her story in a new video produced by the Scleroderma Foundation.

Connie Pulver, of Sterling Heights, Mich., was one patient who shared her story. Diagnosed with limited scleroderma (CREST syndrome) 20 years ago, Connie shared her story so that other people would know that scleroderma isn’t something to be afraid of or that it causes someone to feel like an outsider. “When I was a young girl, people would look at me funny. They didn’t understand the disease. Having scleroderma, you’re like an outcast. People don’t want you to come by them,” she said. “I want people to ask me questions and know that this isn’t a disease to be scared of, but also, people shouldn’t be afraid that they are being stared or laughed at.”

What is limited scleroderma, or CREST?

A form of systemic scleroderma, limited scleroderma affects about 50 percent of patients. Skin thickening is less widespread, and mostly is confined to the fingers, hand and face. The five common features are calcinosis, Raynaud Phenomenon, esophageal dysfunction, sclerodactyly and telangiectasia.

Getting Air Time

Anita DeVine, a former pharmacist was diagnosed in 2008. Scleroderma took away her career and her independence. The disease has ravaged her body, making a simple everyday task like grocery shopping difficult. In the video, the production crew followed Anita to the market.

“That whole segment is just incredible when you see what the patients go through on a daily basis,” said Dyas. “Watching Anita in the grocery store was emotional for me. There are so many things that healthy people take for granted. People just don’t think about that. It’s the day-to-day stuff that is the most difficult.”

For Mark Miller and the rest of the crew from RW Productions, scleroderma was unknown and hard to say. The production company generally works on corporate projects, commercials and event videos. “To us, we thought scleroderma just affected one type of person, like a woman or child. But through the production, we learned how it can be such a unique circumstance, affecting young and old and each gender,” said Miller. “These patients showed so much bravery to have us film and hear their stories. They showed so much unselfishness and bravery on their part. This video is a good resource for the community that can educate a broader group of people so they can help fight this terrible disease.”

Six chapters helped fund the video project. Chapter leaders have used the video to help increase awareness efforts in their local communities by working with TV stations.

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"There’s a lot of things that I used to do that I physically can’t do anymore,” said Anita DeVine in the video.

“Patients like it and are glad that we have such a professional product to build awareness. The message in the video is a strong one, geared toward informing those outside the scleroderma community,” said Ohio Chapter Coordinator Laurie Holden. “We plan to send it out to every station statewide soon, and we have used it in TV interviews to promote our local events.”

“The testimonials are powerful words from those directly affected by scleroderma,” said Mary Blades, the Missouri Chapter president, who has sent the video to the media to help promote the disease and chapter fundraising or education events.

In Michigan, Laura Dyas has sent the video to doctors across the state. Currently, the Chapter is working to engage champions in each city, who will work to promote the video among media outlets. The goal is to have at least 40 people hitting the pavement and knocking on doors to help gain airtime for the video.

Said Dyas, “It’s a big mountain to climb, but this video needs to be blanketed across the country.”

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Actor Mark Teich was diagnosed with scleroderma in 1984 when he was 11. “It came on quick. I lost a lot of flexibility in my body,” he shared. “I had to relearn how to write, hold silverware and dress myself.”

TELLING THEIR STORIES: How you can help

ABOUT THE VIDEO:
Michigan, Missouri, Minnesota, Tri-State, Ohio and
Northern California helped finance the project.

If you’d like more information about how to have
the scleroderma PSA aired in your city, contact
Laura Dyas at ldyas@scleroderma-mi.org or call
(248) 595-8526 for more information.

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“It really helps to have another physical person to lean on as much as possible. Don’t try and tackle this illness by yourself. It’s not an isolated thing,” said James Erik Hodson, an artist and educator, who was diagnosed in 2002.
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Abbey Quinn and her family share how scleroderma has affected their lives. “When we started going to the doctor, I felt scared,” said Abbey in the video about her diagnosis.


 


 

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