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 - Northwestern Memorial Hospital - Chicago

FAQ

More than 100,000 Americans suffer from scleroderma, a progressive autoimmune disease that occurs predominantly in young women, but can affect people of all ages. Scleroderma can lead to stiffening and scarring of the skin, lungs, kidneys, blood vessels, and other organs.
 
The Northwestern Scleroderma Program provides exceptional care for people with all forms of scleroderma while pursuing intensive basic and clinical research.
 
Our team of dedicated physicians, healthcare professionals, and researchers work together to improve the lives of people with scleroderma. The unique strength of the Program is its passion for combining compassionate care with innovative patient-oriented discovery research.  
 
Some key questions about scleroderma include:

What is Scleroderma?

 

Scleroderma is an autoimmune disease where your own immune system cannot tell the difference between your healthy cells and foreign invaders. In scleroderma, your body's immune system begins to overproduce scar tissue, or collagen.

This excess collagen can affect the skin, lungs, heart, and blood vessels by preventing normal functioning and impeding blood flow. Treatment of scleroderma aims to reduce autoimmunity and prevent the buildup of excess collagen.

Who gets Scleroderma?

 

Scleroderma is an uncommon disease which affects fewer than half a million people in America. Scleroderma is far more common in women than in men. In most people, the disease starts between the ages of 35 and 50, although, children and older adults can also develop scleroderma.

What causes it?

 

The cause of scleroderma is unknown. It is thought that environmental exposures, diet, and occupational agents might play a role in triggering the disease. Infection appears to be a very unlikely cause.

The role of heritability is controversial. We do know that scleroderma only rarely occurs in families. However, a predisposition to autoimmunity may have a genetic component. The bottom line is that family members of scleroderma patients have a very low risk of developing scleroderma themselves.

How will my Scleroderma be treated?

 

Scleroderma, like diabetes and high blood pressure, is a chronic illness that will not go away.

However, the severity and complications of scleroderma vary greatly from from person to person. For some people, scleroderma is just a chronic nuisance, while others may develop potentially life-threatening complications.

In many cases, scleroderma becomes less severe over time, and may even go into remission. Treatment can ease the stiffness and fatigue, improve the circulation, and control the disease.

Because every person with scleroderma is different, there is no single treatment for the disease. Your doctors will tailor individual treatments to your specific needs, based on your risk factors and disease manifestations.

What can I expect from my first appointment?

 

Your initial evaluation will include a thorough history to find out when and how the problem started, and what your specific complaints are.

Your doctor will review previous evaluations and medical records, including the results of blood tests, radiology and other evaluations. You will have a complete physical examination.

Most patients will also have blood drawn for tests. In addition, you will be scheduled for appropriate further tests, depending on your symptoms.

These might include pulmonary function testing, imaging (CT scan) of your lungs, and Echo evaluation of your heart. The results of these tests will be reviewed on your follow up visit several weeks later.

Where can I read more about scleroderma?

 

"Systemic Sclerosis/Scleroderma: A Treatable Multisystem Disease," written by Dr. Hinchcliff and Dr. Varga and published by American Family Physician, gives an overview of scleroderma. You can download PDF of this paper here:

New Patient Appointments

 
If you are interested in scheduling a new patient appointment at the Northwestern Scleroderma Program, please contact Mary Carns, Program Coordinator, at 312-503-1137.
 
Please be sure to ask your referring physician's office that the following be faxed or mailed:
 
  • Summary letters and office notes from your physician
  • Pulmonary function test results (PFTs), if available
  • Echocardiogram results, if available
  • CT scan results, if available
  • Recent laboratory findings
 
These records should be faxed to: 312-926-2967, attn: Scleroderma Program, or mailed to:
 
Northwestern Scleroderma Program
Division of Rheumatology
Atten: Mary Carns
675 N. St. Clair St. - Ste. 14-100
Chicago, IL 60611
 

Scleroderma Clinic Location

 
We are located in downtown Chicago, one block east of Michigan Avenue. Our clinic is located on the 14th floor of Galter Pavilion.
 
Division of Rheumatology
Galter Pavilion - Suite 14-100
675 North St. Clair St.
Chicago, IL 60611
Clinic phone: 312-695-8628
Fax: 312-695-0114
Last UpdateMay 16, 2013
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