Getting Social Security Disability Benefits for Vasculitis

If you're experiencing multiple or severe symptoms of inflamed blood vessels that are preventing you from working, you may qualify for disability benefits.

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Vasculitis (va-skyu-LYE-tuss) is a term for a group of rare diseases, all of which involve inflammation of the blood vessels. Doctors think the inflammation is the result of the body's immune system malfunctioning and attacking its own blood cells. The inflammation then causes the walls of the blood vessels to thicken, reducing the width of the blood vessels. This can restrict blood flow and result in organ and tissue damage.

Vasculitis might just affect one organ, or it can affect several. It can be short term or long lasting, depending on the kind of vasculitis you're diagnosed with. According to a recent study in Clinical and Experimental Rheumatology, about a quarter of patients with vasculitis become disabled. If you're experiencing symptoms of vasculitis that last longer than 12 months and that interfere with your ability to work, you may be entitled to Social Security disability benefits.

What Causes Vasculitis?

The exact cause of vasculitis isn't well understood. Normally, the immune system functions as the body's defense against infections from bacteria, viruses, and parasites. Vasculitis is thought to be an auto-immune disorder, meaning that the body erroneously uses its defenses against itself, resulting in inflammation of blood vessels.

Triggers that can cause this auto-immune reaction and vasculitis may include:

  • a reaction to medication
  • certain types of blood cancers
  • chronic long-term viral infections, including hepatitis B and C, or
  • other immune system diseases, such as rheumatoid arthritis, lupus, and scleroderma.

Symptoms of Vasculitis

General signs and symptoms of vasculitis can include:

  • fever
  • headache
  • fatigue
  • weight loss
  • general aches and pains, and
  • shortness of breath.

Other signs and symptoms are related to the specific parts of your body affected by the restricted blood flow:

  • pain after eating, which can occur when vasculitis affects your stomach or intestines
  • dizziness and hearing loss, which can happen when vasculitis affects your ears
  • redness and an itchy or burning sensation in the eyes, which can happen if you have giant cell arteritis, a type of vasculitis
  • numbness or weakness in your hands or feet, which happens when vasculitis restricts blood flow to your extremities, or
  • spots, lumps, or sores on your skin, which can happen if your skin has poor circulation.

While vasculitis can be mild, there are types that can worsen quickly, so early diagnosis is important in order for you to get the right treatment.

Types of Vasculitis

Doctors generally classify vasculitis types by the size of the blood vessels (arteries and veins) that are inflamed. Here are the most common types of vasculitis based on blood vessel size:

  • Largest arteries, such as the aorta (heart):
    • giant cell arteritis (GCA)
    • Takayasu's arteritis
    • Cogan's syndrome
    • polymyalgia rheumatica (PMR)
  • Medium-sized arteries:
    • polyarteritis nodosa
    • Kawasaki disease
  • Small- and medium-sized arteries:
    • granulomatosis with polyangiitis (GPA, formerly called Wegener's granulomatosis)
    • Churg-Strauss syndrome
    • Buerger's disease
  • Small arteries:
    • Henoch-Schonlein purpura
    • cryoglobulinemia
    • Goodpasture's syndrome
  • Various sizes:
    • Behcet's disease, and
    • relapsing polychondritis.

How Vasculitis Is Diagnosed

Your doctor might diagnose one of the above types of vasculitis when you show some or all of the symptoms and have abnormal results on a physical examination, lab tests, or both (when there is no other clear cause).

Your doctor will likely want you to undergo several tests and procedures to determine if you have vasculitis and, if so, what type you have. Tests and procedures might include the following:

  • Biopsy is a surgical procedure that removes a small sample of tissue and looks at it under a microscope to see if there are signs of vasculitis.
  • Angiography is when your doctor inserts a small, thin straw called a catheter into your vein and injects a special dye. The dye allows the outlines of your blood vessels to be visible on X-rays.
  • Blood tests can look for certain proteins and antibodies in your blood that can help diagnose vasculitis.
  • Noninvasive imaging such as X-rays, ultrasound, computerized tomography (CT) scan, magnetic resonance imaging (MRI), and positron emission tomography (PET) can help your doctor determine which blood vessels and organs are affected.

Medical Treatment for Vasculitis

Treatment for vasculitis generally involves medication management with some of the following drugs:

  • Corticosteroids such as prednisone are frequently used to help reduce inflammation, but they can cause side effects.
  • If your vasculitis is serious enough that it endangers a vital organ, your doctor may prescribe cyclophosphamide.
  • If your vasculitis is less serious, you might be prescribed methotrexate or azathioprine.
  • Drugs that are designed to treat autoimmune and inflammatory diseases that are related to vasculitis, such as rituximab, might also be prescribed by your doctor.

It's important to communicate with your doctor about your medications and whether you're experiencing any side effects. Your doctor should note your side effects in their records, which will become important for Social Security to have if you apply for disability benefits. It's also important to follow your doctor's instructions, and to keep track of any tests or imaging, such as angiography or MRI, that you undergo.

How Social Security Determines If Your Vasculitis Is Disabling

Usually, it's not enough just to have a diagnosis of vasculitis in your medical records for the Social Security Administration to find you disabled. Since the symptoms of vasculitis vary in severity from person to person, you'll have to show documentation that your vasculitis is either severe enough that it meets the requirements under Social Security's "listing of disorders," or that it limits you in ways that make it impossible for you to do any job.

Qualifying Under the Medical Listing for Systemic Vasculitis

Social Security specifically names "systemic vasculitis" as disabling under the listing of disorders that can get you medically approved. Systemic means affecting the whole body, or at least multiple organs, so vasculitis that affects only one part of the body, such as the skin, won't qualify under the listing of disorders.

Listing 14.03 mentions polyarteritis nodosa and Wegener's granulomatosis by name, but it covers other types of vasculitis too.

Your vasculitis can qualify you for disability under this listing if you can show, through your medical records, that you meet one of the following sets of requirements:

  • Two or more parts of your body are affected by vasculitis (such as the eyes, intestines, or skin).
  • Of the parts of your body that are affected by vasculitis, at least one of the parts involved must be affected moderately (more than just a little bit).
  • You experience at least two symptoms of vasculitis (such as fatigue, weight loss, and fever).

Or

  • You experience at least two symptoms of vasculitis repeatedly, and you are very limited in your ability to finish tasks, take care of your basic needs, engage in social interactions, or complete chores without taking a lot of extra time.

It can be challenging to meet the requirements for listing 14.03, so if you think that you qualify under the above criteria, talk to your doctor about it. Ask your doctor to provide a "medical source statement," if possible. It's especially helpful to get a statement from a doctor who has special knowledge about your history with vasculitis—for example, a rheumatologist you've seen for years. Ideally, the doctor's statement should specifically address the symptoms and limitations described by listing 14.03, like any involuntary weight loss you've experienced.

Qualifying Vocationally: Getting Benefits If You Don't Meet the Medical Listing

Vasculitis can affect every person differently. You may have mild symptoms that you're able to manage with diet and medication. Or, you may experience symptoms that are more difficult to control and prevent you from working entirely. If this is the case, Social Security can still find you disabled "vocationally" even if the agency doesn't think you're disabled under the medical listings.

Social Security's vocational assessment. To figure out if you can work any jobs, Social Security will be interested in the ways that the symptoms from your vasculitis interfere with your activities of daily living ("ADLs"). Social Security asks you about your ADLs because it makes sense that something you have difficulty doing at home would be something you would struggle with at work.

For example, if you feel shortness of breath after walking to the mailbox and back, it makes sense that you'd struggle to do a job where you'd have to walk around all day. Or, if your vasculitis causes numbness in your hands and fingers to the point where you're fumbling with zippers and dropping forks, you probably wouldn't do well at a job where you had to handle small objects like screws.

Working within your RFC. You aren't expected to do a job that's beyond your capabilities, mentally or physically. The process Social Security uses to figure out what you can and can't do in a work setting is called assessing your "residual functional capacity" (RFC). Your RFC is a list of the most intensive work you can do despite your limitations. For example, if your vasculitis symptoms include headaches and shortness of breath, your RFC might say:

  • you should avoid working with heavy machines and climbing ladders
  • you can walk no more than two hours a day, and
  • you need to take a break to rest once an hour.

To prove there are no jobs within your capabilities, you must first show that your current RFC prevents you from returning to any of the jobs you've performed in the past 15 years. (For instance, because your old job required you to walk four hours a day or use heavy machinery.) Next, depending on your age, education, and skills, you will also likely have to show that there are no other jobs that are less demanding, physically or mentally, that you could do.

How Do I Apply for Disability Benefits for Vasculitis?

An easy way to start your disability application is to file online with the SSA. You don't have to finish the application all at once; just make sure that you keep track of the application number given to you when you start the application so you can access it again if you need to come back to it.

You can also apply for disability benefits by phone by calling 800-772-1213 from 8 a.m. to 5:30 p.m. Monday through Friday. If you're deaf or hard of hearing, you can call the TTY number at 800-325-0778.

Finally, you can apply for disability benefits in person at your local Social Security field office. You can locate your field office here. (Be aware that this option has been temporarily suspended in response to the ongoing COVID-19 pandemic.)

Published January 20, 2022

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