Scleroderma Foundation

In This Issue

Drug Could Provide First Treatment for Scleroderma

Greater Awareness and Earlier Screening Improve Outcomes for Scleroderma

Treatment of Closed Lock of the TMJ

How a Marriage Survives When One Partner Gets Sick

Nine Supplements to Avoid

Kids and Exercise

Patients With Interstitial Lung Disease Need Not Avoid Air Travel, Study Finds

Understanding Your GI Tract

Scleroderma Student Essay Contest

Upcoming Events

Drug Discount Card

Advocacy Update

PHOTO OF THE WEEK

Serial skin biopsies taken from a single patient with scleroderma.
The photographs above are of serial skin biopsies taken from a single patient with scleroderma. Under the microscope, fibrosis, which causes the hardening of the skin, is seen as dense pink material (collagen). more.

Scleroderma Student Essay Contest

Choosing scleroderma as a research topic helps to not only spread the word about the disease, but also helps to inform others about how they too can join the fight against scleroderma. You can win a Wii system or even a trip to Boston!

Needymeds Drug Discount Card

A way to save on your prescription medications.

Scleroderma Legislation

Learn more about these bills.

S. 1545

H.R. 2408

Pfizer, Inc. Logo

2009 Communications Sponsor

Scleroderma Foundation eLetter

Friday, October 23, 2009– Issue #319

eLetter Archive

Greater Awareness and Earlier Screening Improve Outcomes for Scleroderma Despite a Lack of Proven Medications, Patients Are Living Longer Lives

American College of RheumatologyNewswise — Even without any one medication proven to successfully treat their disease, people with scleroderma are living longer lives due to improved monitoring and treatment, according to research presented this week at the American College of Rheumatology Annual Scientific Meeting in Philadelphia, Pa.

Drug Could Provide First Treatment for Scleroderma

The press release below on Gleevec is based on preliminary data. We will still need time and patience since the "verdict" isn't out yet regarding Gleevec and its efficiency to treat scleroderma. What this is showing is the progress the research community is making getting to the molecular level of the disease.

Investigators have identified a drug that is currently approved to treat certain types of cancer, Gleevec, that could provide the first treatment for scleroderma, a chronic connective tissue disease for which a treatment has remained elusive. The news will be presented at the annual meeting of the American College of Rheumatology on October 18 in Philadelphia.

TMJTreatment of Closed Lock of the TMJ

Although it is not the most common of TMJ problems, closed lock is very frightening for those who have it. In its most acute stage, the mouth is almost impossible to open because of both a physical block by a displaced disk and great pain.

How a Marriage Survives When One Partner Gets Sick

How a Marriage Survives When One Partner Gets Sick

Photo by Levi Brown

The contract changes when a husband or wife becomes chronically ill, but many couples learn to not just adjust but also thrive. Here are their stories.

Roanne Weisman remembers the surgeon telling her that the operation to replace her defective heart valve would be as simple “as getting your hair done,” but in the OR it didn’t turn out that way. A tiny piece of calcified heart tissue broke off and traveled to her brain, partially blocking the flow of blood and oxygen, and the doctors were unaware of what was happening until it was too late.

Nine Supplements to Avoid

While all supplements should be used carefully, some should not be used at all. Here are nine supplements you shouldn't take.

Kids and Exercise

Kids and Exercise

Well-selected exercise can boost ability to move, enjoy life

We all know that exercise is “good for us,” but the benefits can even be greater for children with arthritis – as can the downsides of being physically inactive. That’s why it is especially crucial for children with arthritis to keep moving, say experts.

Patients With Interstitial Lung Disease Need Not Avoid Air Travel, Study Finds

Patients With Interstitial Lung Disease Need Not Avoid Air Travel, Study Finds"ScienceDaily" — Patients with interstitial lung disease (ILD) are often concerned about the occurrence of pneumothorax (collapsed lung) or other life-threatening events during air travel. However, new research shows that, even in ILD with a high prevalence of spontaneous pneumothorax, such as lymphangioleiomyomatosis (LAM), there is a relatively low risk of these events occurring.

Understanding Your GI TractUnderstanding Your GI Tract

Digestive Health and Disease: A Glossary

Used by permission of the National Digestive Disease Information Clearinghouse. A copy of this glossary can be ordered from [NDDIC] by calling (301) 654-3810.

Abdomen

The large cavity between the chest and the pelvis containing the stomach, small intestine, colon (large bowel), liver, gallbladder, and spleen.

Upcoming Events

Oct. 23–24, (Fri. & Sat.) A Spooktacular Evening of Fun (Livonia, Mich.)
Oct. 30–Nov. 1 (Fri.–Sun.) Scleroderma Booth at Northwest Womens' Show (Portland, Ore.)
Nov.7 (Sat.) "Stepping Out to Cure Scleroderma" (Coconut Creek, Fla.)
Nov.7 (Sat.) "Nov.7 (Sat.) "Strike Out Scleroderma" Bowl-a-thon(Moore, Okla.)
Nov.7 (Sat.) Patient Educational Conference (Houston, Tex.)
red arrow Nov. 7 (Sat.) 13th Annual "Key to a Cure" Gala (Manhattan Beach, Calif.)
Complete SF Calendar

Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers, MA 01923
Phone 978-463-5843 · 800-722-HOPE (4673)

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