What is Scleroderma or Systemic Sclerosis?
Scleroderma literally means “hard skin,” but it's much more than that. While it often starts as tightness and thickening of the skin in the hands, scleroderma can spread throughout the body and invade the lungs, heart, kidneys, and the bowel. The term “systemic sclerosis” is often used when there is spread of scleroderma to other parts of the body.
The Diagnosis of Scleroderma
An experienced rheumatologist is often able to diagnose scleroderma just by looking at the skin, but sometimes a skin biopsy may be required to confirm the diagnosis. Laboratory tests may show a positive antinuclear antibody (ANA) and a positive Scl-70 antibody.
Other symptoms to look for in scleroderma include cold fingers or toes that turn white, blue or red (“Raynaud's phenomenon”), skin ulcerations at the tips of the fingers or toes (“digital ulcers”), swelling of the fingers, hands, and toes, arthritic joint pain, and muscle weakness of the upper arms and legs (“myopathy”).
There is a variant of scleroderma that is called Mixed Connective Tissue Disease (MCTD). It is an “overlap” condition that has some features of scleroderma, but it also has features of systemic lupus erythematosus and polymyositis. The anti-RNP antibody is commonly strongly positive in this disorder.
Getting Disability Benefits for Scleroderma
To qualify for disability benefits for scleroderma, either from social security or from a private disability carrier, you must show not only that you have scleroderma, but you must also present medical evidence that your scleroderma causes symptoms that impair your functionality to the extent that they disable you from working.
When applying for social security disability benefits, you may qualify for benefits if you have symptoms and findings, such as involvement of at least two separate organ or body systems, contractures and deformities of the hands or feet, severe fatigue, malaise or involuntary weight loss, or severe (gangrenous) Raynaud's. These findings may meet a “Listing,” [See: Disability Evaluation Under Social Security, https://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_04]
If you symptoms and findings that do not meet a Listing under section 14.04 of the Immune System Disorders, you may still qualify for disability benefits if your doctor documents in your chart that, because of your symptoms, you cannot perform the essential functions of your job.
For example, if from your scleroderma, you have muscle weakness and the most you can lift or carry is less than 10 pounds; if you have severe fatigue and the most you can sit is less than 6 hours out of an 8-hour workday; or, if you have painful knees and lower extremities and the most you can stand or walk is less than 2 hours; then the social security administration will probably consider your residual functional capacity (“RFC”) to be less than “sedentary,” and the likelihood of obtaining a disability benefits award should be quite high.
Essential Medical Documentation of Scleroderma Needed for Disability Benefits:
Remember, you must tell your doctor about your symptoms, what they are like and how they affect your ability to do activities of daily living and your ability to work.
SSA utilizes the term "Impairments" (and resulting "limitations" - why you cannot work) are the essential bits of information that must be clearly and consistently documented throughout your medical history by the treating sources (medical doctors, psychologists, psychiatrists).
SSA additionally utilizes the term "Residual Functional Capacity" (RFC); this is a key concept related to the resulting physical and/or mental impairments from conditions for which the disability claim is based upon and the impact upon ability to work.
SSA has its own forms that are used for Physical RFC here. These forms can be filled out by the treating source who has the opportunity to examine the patient and understand the limitations which result from his/her condition and thereby document with specificity in the language of SSA disability.
SSA "Listing" or "Blue Book" description of scleroderma can be found here (See 14.04)