Getting Social Security Disability Benefits for Keratoconus

Most people have never heard of keratoconus, but it occurs in about 1 of every 2,000 people. The disease affects the cornea, the part of the eye that focuses light, causing it to bulge out into a cone shape. This makes it difficult for the eye to focus, with or without glasses, and can cause permanent vision loss if left untreated. Out of the 14 million Americans who suffer from visual impairments, about 200,000 have keratoconus.

Symptoms of Keratoconus

The first noticeable symptom of keratoconus is mild blurry vision (or progressively worsening vision) that's not easily corrected by glasses or contacts. Other symptoms can include:

• halos or glares surrounding bright lights
• difficulty seeing at night
• eye irritation
• double vision
• headaches with associated eye pain, and
• sensitivity to bright light.

What Causes Keratoconus?

Keratoconus occurs when the small fibers of protein in the eye called collagen become weak and can't hold the cornea in shape. The cause of keratoconus is generally unknown, but some factors can increase your chance of getting it, including:

• a family history of the disease
• genetic disorders (such as down syndrome, Ehlers-Danlos syndrome, or retinitis pigmentosa)
• age (usually begins in teenagers, less commonly in adults over 30)
• constant eye inflammation from allergies or eye irritants, and
• frequent eye rubbing.

Can You Get Disability Benefits for Keratoconus?

A diagnosis of keratoconus alone is not enough to get Social Security disability benefits. But if you're experiencing significant vision loss, you might be able to get benefits. The Social Security Administration (known as "Social Security" or "SSA") will evaluate your claim to decide whether:

• your medical records prove your medical condition is severe
• your symptoms meet the requirements of one of Social Security's listings, and
• you have the ability to do any type of work activity.

Proving Your Eye Condition Is Severe

Social Security screens all claims first to see if they meet the basic requirements for disability. To get past this step, you have to have an impairment that interferes with basic work-related activities. And it must be expected to last twelve months or longer. Basic work-related activities are those that are required in most jobs and include seeing, hearing, speaking, walking, standing, sitting, and so on. If your keratoconus causes more than a minimal effect on your vision, it's enough to pass this screening test.

Meeting a Disability Listing

Social Security has a disability evaluation handbook that outlines the criteria for disability for various medical conditions. The agency calls these rules "listings."

Social Security considers symptoms that affect vision under listings 2.02, 2.03, and 2.04 for vision loss or blindness. You can find a description of the vision loss or blindness listing requirements here. But it's important to know that the criteria explained in the listings can be difficult to meet. In fact, most claims that Social Security approves don't meet the criteria of one of the listings. (For example, you won't meet the requirements of listing 2.02, for a loss of "central visual acuity," unless you have 20/200 vision or worse in both eyes, while you're wearing glasses or contacts.)

Instead, Social Security approves the majority of claims because the applicants' symptoms and limitations make them unable to perform their previous jobs, and they're unable to transition into another type of work. So, even if you don't meet one of Social Security's listings, you might still be found disabled under Social Security's other rules.

Being Unable to Work Because of Keratoconus

To decide if you're unable to work, Social Security will look at your medical records to see whether there's evidence you have a serious medical condition that limits your ability to do many work-related activities. In this step, you generally need to suffer from moderate to extreme limitations to be considered unable to do most jobs.

To discover what you're able to do, a claims examiner will determine your residual functional capacity (RFC). Your RFC is the most intensive work you can still do—even with the limitations caused by your medical condition. If you have severe keratoconus, your doctor might limit you from performing jobs that require good eyesight.

An RFC from someone suffering from severe keratoconus might include the following limitations:

• avoid working in locations with dim lighting
• avoid working at unprotected heights
• avoid working around dangerous moving machinery, and
• no operation of motor vehicles.

First, Social Security will compare your RFC to tasks you had to do at your previous work to decide if you're still able to do that kind of work. If not, the agency will then consider your RFC, age, education, and prior work experience to determine if you could do some other type of work. For instance, if you worked as a truck driver before you applied for benefits, with the above RFC, you wouldn't be able to do that job anymore. Social Security would then look to see if there are any other jobs that someone with your vision limitations could be expected to do.

If you're under 55, Social Security is likely to decide you have the ability to do some other type of work that doesn't require you to drive. But if you're over 55, Social Security might not expect you to learn to do some other type of work, if, in addition to vision problems, you have physical limitations that prevent you from doing heavy or medium work. For more information, see our article about how Social Security decides if you have the ability to perform some other type of work.

Medical Evidence Required to Prove a Vision Disability

Social Security will evaluate your claim based on your medical evidence—this should include test results, imaging, and your doctors' records and treatment notes. Social Security might also send you for an independent exam by a doctor who works for Social Security, or might ask your doctor to complete a questionnaire about your limitations.

To get approved for disability for vision loss caused by keratoconus, your records should include the following, at a minimum:

• a diagnosis of keratoconus by an ophthalmologist (a doctor who specializes in eye and vision problems)
• imaging results such as a topography that measures the curve of the cornea
• perimetry (visual field) testing to check your peripheral vision
• doctor's notes reflecting the frequency and severity of your symptoms, and
• a history of any treatments you've tried and whether they helped or caused side effects.

How Do I Apply for Social Security Disability Benefits?

An easy way to apply for Social Security disability benefits is to file your claim online at www.ssa.gov/applyfordisability/. You can also file a claim over the phone by contacting Social Security at 800-772-1213, but be prepared for long wait times. For more information, please see our article about applying for Social Security disability benefits.

_{Updated October 13, 2022}