Scleroderma Statistics
Scleroderma, also known as systemic sclerosis (SSc), is a rare disease that affects about 300,000 people in the United States.
Prevalence of Scleroderma
The prevalence of scleroderma is higher in the US than in Europe or Asia, about 250 per million adults.
More women than men are impacted by SSc, with a ratio of about 4:1.
Factors that affect prevalence
Age: Scleroderma can affect people of any age, but it’s most common between the ages of 25 and 55.
Sex: Women are affected more frequently than men.
Race: Black people have a higher incidence of scleroderma than white people.
Family history: There may be a slight predisposition to scleroderma in families with a history of rheumatic diseases.
What are the Functional challenges related to Scleroderma?
Functional limitations related to scleroderma primarily involve difficulties with hand movement due to skin thickening, joint stiffness, and tendon involvement, which can significantly impact daily activities like dressing, eating, and gripping objects.
Other limitations include impaired mobility due to tight skin on the limbs, breathing difficulties from lung involvement, digestive issues from gastrointestinal tract complications, and fatigue due to the systemic nature of the disease.
Key functional limitations of scleroderma:
Hand dysfunction: Difficulty making a fist, gripping objects, fine motor skills limitations, and pain in the hands due to skin thickening and joint stiffness.
Limited mobility: Stiffness and tightness in skin of the limbs, leading to restricted range of motion in elbows, knees, and wrists.
Facial expression limitations: Tightening of facial skin can affect facial expressions and mouth opening.
Difficulty swallowing (dysphagia): Esophageal involvement can cause problems with swallowing due to muscle weakness and narrowing of the esophagus.
Respiratory issues: Pulmonary fibrosis (scarring and thickening of lung tissue) can lead to shortness of breath and reduced lung capacity.
Gastrointestinal problems: Difficulty with digestion, abdominal pain, and diarrhea due to issues with bowel motility.
Raynaud’s phenomenon: Episodes of color changes and pain in the fingers due to poor blood circulation in response to cold temperatures.
Fatigue and weakness: Systemic inflammation and pain can contribute to significant fatigue.
Can I qualify for Social Security Disability Income?
The disabling symptoms of systemic scleroderma create many daily challenges for those living with this condition.
As mentioned above, cases of localized scleroderma are usually mild; however, systemic scleroderma is considered an impairment by the Social Security Administration and is listed in its Blue Book under Section 14.04 Systemic Sclerosis (Scleroderma). If you have systemic scleroderma, you may qualify automatically for disability benefits if you meet all the requirements stated under the listing.
In addition to a diagnosis of systemic sclerosis, you must have medical evidence of one of the following conditions.
Two or more organs or body systems are involved, for example, the skin and lungs, with:
One organ or body system affected to a moderate level of severity; and
Two of the following symptoms – severe fatigue, fever, malaise, or involuntary weight loss.
OR
Contractures or deformities in hands or feet, with one of the following:
A documented need for a walker, bilateral crutches or manual wheelchair that requires two hands; OR the inability to use one upper extremity to independently initiate, sustain, and complete work-related activities involving fine and gross movements AND a documented need for a one-handed, hand-held assistive device such as a cane; OR
Finger contractures or deformities in both hands that prevent you from performing fine and gross movements like lifting objects, sorting papers, holding a pen, or tying your shoe.
Atrophy in Arms or Legs, with one of the following:
Irreversible atrophy in one or both legs that prevents you from walking without an assistive device that requires two hands such as a walker, or requires only one hand, such as a cane, but you’re unable to use the other hand due to a physical impairment; OR
Irreversible atrophy in both arms that prevents you from performing movements like lifting objects, sorting papers, holding a pen, or tying your shoe.
Raynaud’s Phenomenon, with one of the following:
Gangrene in at least two limbs (arms and/or legs); OR
Ischemia (lack of blood supply) that prevents you from walking without an assistive device that requires two hands, or requires only one hand; OR
Ischemia that prevents you from performing movements like lifting objects, holding a pen, or tying shoes.
You have “repeated manifestations” or recurring symptoms of systemic sclerosis that cause significant interference with your daily activities, social functioning or ability to complete tasks in a reasonable amount of time with two of the following symptoms:
Fever
Severe fatigue
Malaise (feeling unwell)
Involuntary weight loss
You will need to provide complete medical records to Social Security as evidence of scleroderma, including visits to your doctor, your doctor’s treatment notes, blood tests, imaging such as MRIs, and organ function tests to see if the heart, lungs or kidneys are affected.
When you talk to your doctor, give your doctor specific examples of how your scleroderma limits your ability to perform tasks in the workplace, such as using tools, writing, typing, lifting, walking, and standing. Also, if you have to be absent multiple times a month or be off-task throughout the day because of your condition, ask your doctor to document these issues. The more details the doctor includes about your limitations within your medical records, the better. Ask your doctor to fill out an RFC (Residual Functional Capacity) form detailing your limitations in standing, sitting, walking, and reaching. Make sure you include treatments you have tried and how you responded.
What if I don’t meet the requirements of Social Security’s listing?
If you do not satisfy the Social Security Administration’s criteria for systemic sclerosis, you may still qualify for disability benefits by demonstrating that your medical condition has significantly impaired your functional abilities, rendering you incapable of performing your job.
For instance, you might find it challenging to stand for extended periods or walk long distances, and you may experience difficulties with balance.
The Social Security Administration will examine your medical documentation and conduct its own Residual Functional Capacity (RFC) assessment to determine if your medical impairment prevents you from doing the work you did prior to developing the condition.
If you cannot do your prior work, they will then determine if you can do any other type of work, taking into consideration your medical condition, your age, and your educational background, as well as any past work experiences or skills that you may have that could transfer to any other type of work.
The agency adheres to a specific set of medical-vocational grid rules to ascertain when it expects an applicant to acquire new job skills. Social Security recognizes that as we get older, employers will not be willing to retrain us to perform new tasks.
To account for this Social Security has established what they refer to as “Grid Rules” for individuals over 50 years old. For example, if an individual is 50 years old and has worked as a laborer performing heavy work, but due to a disabling condition, they are now limited to sedentary work, they can still be found disabled if they have no transferrable skills to a sedentary job. Similarly, if this same individual is between 55 and 60, they can be disabled even if they can perform sedentary and light work if they have no transferrable skills to such work.
If you cannot do your old job nor perform any other kind of work, or if you grid out due to your age and limitations, you will be considered sufficiently disabled for SSDI purposes.
What happens if I have multiple ailments?
You may also be eligible for SSDI if you have an additional medical condition.
Many applicants experience multiple health issues; although a single disorder may not fulfill the criteria of a Social Security impairment listing, the Social Security Administration is required to evaluate how the combination of all your medical conditions affects your ability to maintain employment and carry out daily activities.
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