Compassionate Allowance - Erdheim Chester Disease

Many disabled Americans wait years for their disability claims to be approved by the Social Security Administration (SSA). For those who suffer from severely debilitating conditions, however, the long waiting periods can seem like cruel and unusual punishment. The SSA took note of this fact and in 2008 they rolled out the Compassionate Allowances program. Under this program, qualifying applicants can be approved for Social Security Disability benefits in as little as 10 days. There are now 200 conditions that can qualify an applicant for Compassionate Allowances processing. Erdheim Chester Disease is one of these 200 conditions.

Erdheim Chester Disease - Condition and Symptoms

Erdheim-Chester Disease, also known as ECD, is a very rare condition that can affect many different organs within the body. The condition is characterized by the excessive production and accumulation of histiocytes, which are cells the body uses to fight infections. These histiocytes accumulate within the loose connective tissue of the body’s organs, causing the organs to become thickened and fibrotic. Without proper treatment, the condition will eventually lead to organ failure.

Symptoms of Erdheim Chester Disease can vary from one individual to the next. Common symptoms of the condition include:

  • Fever
  • Unexplained weight loss
  • Excessive urination
  • Pain in the bones
  • Pain in the chest
  • Chronic cough
  • Sinus discharge
  • Cardiac failure
  • Kidney disease
  • Enlarged spleen
  • Enlarged liver
  • Bone lesions
  • Diabetes insipidus
  • Lesions in the visceral organs
  • Night sweats
  • Aching of the muscles and/or joints
  • Fatigue
  • Difficulty speaking
  • Shortness of breath
  • Vision problems

It is important to note that it is possible to have the disease without having all of the above-mentioned symptoms. Some patients will suffer from all of the symptoms while others will only experience a few of them. Unfortunately there is no cure for Erdheim Chester Disease. Treatment is focused on addressing the symptoms of the condition. Treatment involving surgical debulking, interferon, chemotherapy, radiation therapy and corticosteroid therapy has proven to have varying degrees of success.

Applying for Social Security Disability Benefits with Erdheim Chester Disease

If you wish to qualify for Social Security Disability benefits as a result of Erdheim Chester Disease and you want your claim to be processed under the Compassionate Allowances guidelines, you will need to include specific medical evidence along with your application for disability benefits. This medical evidence should include:

  • CT scans, MRIs and X-rays along with bone scans that indicate abnormal thickening, masses or lesions
  • Results of a bronchoscopy with biopsy
  • Tissue biopsy results
  • Results of pulmonary function tests
  • Medical documentation evidencing symptoms that are specific to organ involvement
  • Medical documentation evidencing weight loss, muscle and joint aches, weakness and fatigue
  • Laboratory testing showing kidney problems
  • Evidence of soft tissue masses or lesions on the body
  • Evidence of fibrous growth around the heart

While not all patients who suffer from Erdheim Chester Disease will have medical evidence proving all of the above, since cases can differ from one person to the next, it is important that you gather as much medical evidence as possible pertaining to your specific case of the condition. This medical evidence will be necessary in order to support your claim for disability benefits and to help the SSA understand how your claim qualifies for processing under the Compassionate Allowances guidelines.

Erdheim Chester Disease and Your Social Security Disability Case

If you are suffering from Erdheim Chester Disease and wish to obtain Social Security Disability benefits, you should consider retaining the services of a disability attorney prior to filing your claim with the SSA. Your attorney will understand what evidence the SSA will need to see in order to grant you an approval under the Compassionate Allowances guidelines. Because not all cases of Erdheim Chester Disease are the same, it is imperative that the SSA understands the severity of your condition and how your condition qualifies you for fast-track approval of your disability benefits under the Compassionate Allowances program.

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