Ask the Expert: Dr. Jessica Gordon, Rheumatologist, Answers Your Questions About Scleroderma

Q1: What is the cause of scleroderma? Does it occur in conjunction with other diseases or conditions?

While the specific cause for the development of scleroderma is unknown, there is a role for immune dysfunction, vascular dysfunction and overproduction of collagen leading to fibrosis of the skin and other organs as well as the multiple other clinical manifestations seen in this syndrome. Scleroderma can be localized and involve the skin only or it can be systemic and involve both the skin and the internal organs. Systemic sclerosis or systemic scleroderma has different subtypes of disease- limited versus diffuse. These different subtypes have different patterns of skin and internal organ involvement and require different types of monitoring or treatment. Additionally, scleroderma can overlap with other types of connective tissue disease. If you have scleroderma, your rheumatologist can help you understand which subtype you have.

Q2: I am in a scleroderma support group and realize that most of the participants are women. Is the disease more popular in women than men?

Like lupus and rheumatoid arthritis, scleroderma tends to affect women more frequently than men. Specifically, scleroderma is approximately four times more common in women than men. Race and ethnicity may also affect the risk of developing this condition.

Q3: Is scleroderma genetic?

There are genetic susceptibility factors that have been identified for scleroderma, but the genetics of this condition are complex. The overwhelming majority of patients with scleroderma will not have an affected family member with this disorder. A very small number of scleroderma patients (about 1.5%) will have an affected first degree family member (meaning parent, child, or sibling.) These families are being studied by researchers to learn more about scleroderma genetics.

Q4: Is scleroderma confused with other diseases or conditions? I have noticed thickening of the skin and itching and was going to see a dermatologist but the more I research, I wonder if I should see a rheumatologist.

Scleroderma can present in ways common to other rheumatologic disorders and can be confused with other conditions. A rheumatologist can help distinguish between these conditions. Additionally, there are several conditions, which may not be rheumatologic, which can give you thick and itchy skin. A good place to start might be your primary medical doctor who can help refer you to the correct specialist. A diagnosis of scleroderma frequently requires consultation between several different specialists including dermatology in addition to rheumatology.

Q5: I have scleroderma- would altering my diet help improve my symptoms?

There is no strong, scientific evidence to recommend a specific diet to treat scleroderma, but in general it is good to eat a healthy and balanced diet.With that said, specific clinical manifestations of scleroderma may improve with dietary modification. Certain foods can trigger gastroesophageal reflux disease (GERD) and avoiding them can improve symptoms. Other issues which may respond to dietary changes include gastrointestinal or esophageal dysmotility, severe weight loss and constipation. Patients with heart or kidney disease as part of scleroderma may require a low salt diet. Sometimes a consultation with a nutritionist is helpful, and be sure to discuss your diet and your concerns with your physician.

Dr. Jessica Gordon is an Assistant Attending in the Department of Rheumatology at Hospital for Special Surgery. She specializes in the treatment of various rheumatologic conditions including scleroderma, vasculitis, systemic lupus erythematosus, and rheumatoid arthritis.

Topics: Rheumatology
The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.


  1. Hi,I was diagnosed with systemic scleroderma in 2008. Lately I have noticed a thickening of the stems of my toes and a little numbness. My fingers are curled and I was just wondering if the same can happen with your toes. Thank you

    1. Hi Julie — In Systemic Sclerosis contractures, which are permanent shortening of the tendons, muscles, skin, and surrounding tissues, can develop as a result of fibrosis and inflammation. This can affect many joint areas in the body including the feet as well as the hands, shoulders, ankles and other areas and results in the curling that you describe. It is important for you to see your rheumatologist so that he or she can properly evaluate what you are noticing and to further work up your numbness. Numbness can be caused by a number of different issues, many of which are amenable to treatment.

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