Compassionate Allowances - Erdheim Chester Disease

As a rare and progressive, often terminal illness, Erdheim Chester Disease (ECD) automatically qualifies for Social Security Disability (SSD) benefits, though you must still go through the application and review processes, and thoroughly document your condition, in order to get benefits.

Disability Programs

The Social Security Administration (SSA) has two disability programs for which you may qualify with ECD:

  • Social Security Disability Insurance (SSDI), which has work history and work credit requirements.
  • Supplemental Security Income (SSI), which sets strict limitations on income and other financial resources.

In addition to the basic technical eligibility for each program, you must also prove medical disability. With ECD, substantiating your disability is fairly straightforward.

The Compassionate Allowance Program

This program, which is also known simply as CAL, ensures applications filed for specific medical conditions are reviewed more quickly, in order to get benefits to those who need them most. ECD is a CAL condition, which means you will only have to wait a matter of weeks to receive a decision on your application.

While CAL designation ensures a quicker decision and an “automatic” approval for disability benefits, you must still document your illness through substantial medical records in order to be approved.

Evidence Required for Proving Disability

The SSA reviews your medical records to confirm two key pieces of information:

  • A definitive diagnosis
  • A severity level that results in disability

To confirm the definitive diagnosis of ECD, the SSA needs to see any or all of the following diagnostic test results:

  • Imaging scans, including MRIs, CTs, X-rays, and bone scans documenting the presence of masses and lesions
  • Biopsies of tissues from the affected areas of your body
  • Breathing tests, renal function tests, and other exams that document compromised organ function due to masses and lesions

To document the severity level of your ECG, the SSA will also need to see in your medical records that you suffer from signs and symptoms consistent with disability and with the specific areas of the body affected by your condition. These may include any or all of the following physical findings:

  • Bone pain, particularly in the legs and arms
  • Muscle and joint aches and pains
  • Weight loss
  • Fatigue and weakness
  • Compromised organ function, which may include kidney issues, breathing difficulty, trouble speaking, vision loss, and heart problems
  • Decreased immunity and more frequent infections

The minimum evidence required by the SSA includes:

  • A thorough clinical history describing the features and prognosis of your ECG.
  • Physical examination notes that also document the features of your condition and the symptoms from which you suffer.
  • Biopsies of tissues from the organs affected by your ECG.
  • Results from organ function tests

Applying for Benefits

You can apply in person at your local SSA office, but you will need to schedule an appointment and then wait for that appointment date to arrive. Applying online with the SSA’s website is faster and allows you to begin your application at any time.

While denial of benefits is rare with a CAL designated condition, they do occur. When this happens, it is usually due to a lack of appropriate medical evidence. Lacking documentation can also lead to delays in approval, while the SSA seeks out and reviews your medical records. To shorten your wait for disability benefits and ensure approval, submit as many of your medical records as possible along with or just after sending in your SSD application.