Know Scleroderma So People Don't Suffer Alone

Know Scleroderma So People Don't Suffer Alone

North American nonprofits partner in June to raise awareness of rare disease

Newswise — SAN FRANCISCO, BOSTON and HAMILTON, Ontario, June 1, 2016 /PRNewswire-USNewswire/ -- If you've ever silently questioned someone wearing mittens on a warm spring day, the answer may be scleroderma. Or wondered why a woman, who otherwise appeared middle-aged, wore a face as wrinkle-free as her teenage daughter. The answer may be scleroderma.

scleroderma. hard word. harder disease.But chances are you don't know scleroderma. You don't know the pain and challenges that the relatively rare autoimmune disorder wreaks on sufferers. That's why a group of nonprofits is working together in June during Scleroderma Awareness Month. They're partnering so that more people know scleroderma and fewer patients will suffer in silence.

Like Nancy Stephens. Stephens was diagnosed with scleroderma 12 years ago. She leads a support group in Michigan. It's cathartic being with people who understand her plight. Compassion goes a long way, she said.

"It's good therapy for me," Stephens said. "The biggest thing is knowing that they have the same problems I do. I can go to them and they can come to me anytime and say 'I'm having a really bad day today' and not have them say back, 'well, you look just fine.'"

During the month of June, North America's leading scleroderma advocacy and research organizations—Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada—will combine marketing efforts to boost awareness and spark compassion. This year marks the agencies' third consecutive annual campaign effort under the name "Hard word. Harder disease." Together, they've grown the scleroderma network and increased online buzz and engagement.

The campaign theme touches on the difficulty of the word and the gravity of scleroderma, a rare disease with no known cause or cure. It will run across partner Facebook and Twitter channels (#hardword) throughout the month of June, with visuals and copy that educate and challenge people to take a pledge to tell one person about the disease. The campaign includes blogger outreach in North America and a microsite, www.HardWord.org, with general information about and links to additional resources.

New this year is a virtual flash mob through Thunderclap. The partners and supporters worldwide will use the social media tool to share a campaign message at the same time across Facebook and Twitter. On June 29, World Scleroderma Day, the message will encourage people to learn about scleroderma and tell others about the disease.

Scleroderma is a crippling autoimmune disorder characterized by a thickening and hardening of the skin that is so severe, it steals away the use of patients' fingers, hands and limbs. As it advances across their bodies, the uncontrolled growth of fibrous tissue can damage patients' hearts, lungs and other organs, often leading to a prolonged and painful death.

Scleroderma FoundationThe Scleroderma Foundation is the national organization for people with scleroderma, their families and friends. Headquartered in the metro Boston area in Danvers, Mass., the Foundation has a network of 21 chapters and 160 support groups committed to carrying out the three-fold mission of support, education and research. The Scleroderma Foundation is one of the largest nonprofit funders of peer-reviewed medical research, in 2015 making available $2 million in new research grants to find the cause, better treatments and a cure for scleroderma.

Scleroderma Research FoundationThe Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we've stood firm in our belief that the best way to help scleroderma patients is to fund medical research aimed at improved therapies and a cure. Today, we are one of the nation's largest nonprofit investors in scleroderma research. Patients and their loved ones find hope in the fact the SRF is dedicated exclusively to funding medical research that will help them live longer, fuller lives.

Scleroderma Society of CanadaThe Scleroderma Society of Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives. The Scleroderma Society of Canada is committed to promoting public awareness, supporting those affected by scleroderma and funding research to find a cure. Until then, we will work to improve the quality of life for those with scleroderma.

Photo - http://www.photos.prnewswire.com/prnh/20160601/374157

CONTACT: Jillian Scola, Communications Manager, Scleroderma Foundation, [email protected], (978) 624-1243; or Amy Hewitt, Executive Director, Scleroderma Research Foundation, [email protected], (415) 834-9444 or (800) 441-CURE (2873); or Anna McCusker, Executive Director, Scleroderma Society of Canada, [email protected], (866) 279-0632