What is Scleroderma?

Judy Williamson,
Scleroderma Patient

The word “scleroderma” is Greek for hard skin, the most visible characteristic of the disease. In fact, scleroderma is much more than this; chronic, complex and debilitating, it often affects the internal organs with life-threatening consequences. Depending on the subtype of illness, scleroderma can damage the lungs, kidneys and gastrointestinal tract with grave results. Peripheral vasculature damage due to scleroderma can result in loss of digits or limbs. In some cases, the joints and muscles are affected, resulting in a loss of mobility.

Scleroderma falls into several different disease categories: It is a vascular disease because it can constrict and injure tiny blood vessels. It is a connective tissue disease because it can cause abnormal changes to the skin, tendons and bones. Like many other rheumatic disorders, scleroderma is believed to be an autoimmune disease because the disease can apparently trigger the body to make antibodies against itself.

The symptoms and severity of scleroderma vary from one person to another and the course of the disease is often unpredictable. The number of women affected with scleroderma is disproportionately high with some estimates suggesting as many as four out of every five patients being female. The disease most often strikes between the ages of 20 and 50; however, children and those above age 50 across all ethnic groups are also affected.

Today, there is no way to prevent scleroderma and there is no cure. Treatments are available for some, but not all of the most serious complications of the disease. Current treatments include medications that modulate the immune system, chemotherapy drugs, vasodilators and ACE-inhibitors. Presently, most treatments act to slow the progression of the disease and limit damage rather than truly arresting the disease. In addition, some of the drugs currently in use can have serious side effects. There is much work that remains to be done.

Despite the number of people affected by scleroderma and the devastating effect the disease can have, scleroderma research remains critically underfunded by the National Institutes of Health. Contributions made to the Scleroderma Research Foundation support promising exploratory projects as well as innovative research studies that may provide the basis for longer term investment by federal research funding programs. Until new therapies are made possible by advances in medical research, people living with scleroderma continue to have hope, knowing that scientists are working every day on their behalf.

For a more detailed description of scleroderma, click here.

The SRF strives to keep you informed of headlines, reports and announcements affecting the scleroderma community. Click on the links to visit our library where you will find articles intended to keep you up to date on current news for patients, research and SRF related news.

You can help fund promising research aimed at helping people living with scleroderma. Please donate online today.

Whether you know the name of a particular Cure Crew member you’d like to support or just want to lend a helping hand to someone working hard to raise funds and awareness in your area or elsewhere, click the button above to help make a difference.
Many fundraising events will serve a double purpose, raising awareness as well as critical research dollars. From bowling tournaments to letter campaigns, garage sales to gala dinners, Cure Crew members across the country are bringing people together and raising money to help scleroderma patients live longer, fuller lives.

member scoreboard

top fundraisers

Brian and Roberta Hunter
$22,822.00
Cool Comedy - Hot Cuisine
$16,090.00
Annette Michaelsen
$12,535.00
Alexa and Julie Armon
$8,707.00
Roberta Hunter
$5,918.00

Become a Cure Crew member today. Whether you choose to launch an awareness-building campaign or organize a fundraising event, you are making a huge difference to the hundreds of thousands of people living with scleroderma.

The Cure Crew members are part of a vital grassroots program to raise funds and national awareness of scleroderma. Participating members make a real difference in the lives of people living with scleroderma and their loved ones—as well as honoring those who have passed away from complications caused by the disease. At the very heart of the program are people across America doing what they enjoy and helping to raise funds and awareness at the same time.

Become a Cure Crew member today. Whether you choose to launch an awareness-building campaign or organize a fundraising event, you are making a huge difference to the hundreds of thousands of people living with scleroderma.

Many fundraising events will serve a double purpose, raising awareness as well as critical research dollars. From bowling tournaments to letter campaigns, garage sales to gala dinners, Cure Crew members across the country are bringing people together and raising money to help scleroderma patients live longer, fuller lives.

Every seed of awareness that gets planted has the potential to educate another person about scleroderma and inspire them to lend their support in funding the quest for a cure.