A new diagnosis of scleroderma doesn't have to be overwhelming, even though the disease itself is complex.  The symptoms of scleroderma vary greatly from individual to individual, and the effects of scleroderma can range from very mild to severe.  The seriousness will depend on what parts of the body are affected and the extent to which they are affected.  A mild case can become more serious if not properly treated.  Prompt and proper diagnosis and treatment by qualified physicians may minimize the symptoms of scleroderma and lessen the chance for irreversible damage.

Early Signs & Symptoms

Most often, the earliest sign & symptom of scleroderma is when a person's fingers become extremely sensitive to cold temperatures and/or emotional stress, which causes them to sometimes change color (blue, white or red).  This condition is known as Raynaud’s Phenomenon.  It is a condition in which the small blood vessels of the hands or feet contract in response to cold or anxiety. As the vessels contract, the hands or feet turn white and cold, then blue. As blood flow returns, they become red.

Other early signs & symptoms of scleroderma include:

• Fatigue
• Stiff joints
• Loss of strength
• Pain
• Sleep difficulties  
• Skin discoloration

First Steps

If you have been newly diagnosed with scleroderma you are not alone.  Although scleroderma is a relatively rare condition, it is estimated that as many as 30,000 people in Canada and as many as 300,000 people in the United States are living with scleroderma. Start now, by following the steps below, to learn more about scleroderma and how you can manage living with this disease through proper medical care and treatment, lifestyle modification and support. 

STEP 1:

Use the Scleroderma Society of Ontario web-site (www.sclerodermaontario.on.ca) for basic information and guidance.

• Start by reading the sections in this web-site found in Scleroderma Overview and Diagnosis & Treatment to provide you with some basic information about issues relating to scleroderma health care management.  Be sure to know why a person with early diffuse scleroderma should perform routine blood pressure monitoring - Hypertension can lead to renal crisis and therefore must treated as a medical emergency with rapid assessment of renal function and control of blood pressure elevation.

• Print information for your family physician and other health care providers so you can begin to educate your doctors as well as yourself.  Medical Summary and Medical Articles are excellent resources to start with.

STEP 2:

Contact a Scleroderma Treatment Clinic to ensure you start receiving specialized medical care customized to your personal health needs.

• A Scleroderma Treatment Clinic can provide you with medical care and resources necessary to access sub-specialists who work to treat the many facets of scleroderma including those that affect the immune system, skin, joints, lungs, kidneys, gastrointestinal tract, heart, and vascular system. 

• At a Scleroderma Treatment Clinic, you can receive information regarding current care standards and treatment options.  You will also receive a medical care plan suited to your personal health needs and improving your quality of life.

To find nearest you, a medical doctor who specialize in the care and treatment of persons with scleroderma, click here.

STEP 3:

Get involved to help out and improve the quality of life for people living with scleroderma!

• Join a Scleroderma Support Group today!  Invite your family and friends too, and together, learn successful tips for health strategy management for living with scleroderma.  Stay informed about new medical treatments and lifestyle choices that effectively relieve or delay the progress of disease symptoms.  For more information to find more information about support groups nearest you, click here.

• Contact the Scleroderma Society of Ontario (SSO) office to receive information regarding upcoming events, fund-raising activities and newsletters.  To contact the SSO, click here.

• Become a volunteer and help the Scleroderma Society of Ontario by contributing your experience and time to public awareness. marketing, fund-raising, education, research, government relations.  To find out more information how to volunteer with the SSO, click here.

• The Scleroderma Society of Ontario welcomes your support in the fight against this disease through financial contributions.  Donations are devoted to creating awareness, providing patient support and funding research so that new scientific discoveries will be made and translated into improved treatments and patient care.  To find out more information how to donate to the SSO, click here.

References:

• The National Institute on Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, U.S. Department of Human and Health Services.
• The Scleroderma Foundation in consultation with Dr. Maureen Mayes, M.D.,M.P.H., University of Texas/Houston and Dr. John Varga, M.D., Northwestern University.

 

Back to top