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Menkes Disease and Social Security Disability

Menkes Disease (Classic or Infantile Onset Form) and the Social Security Disability Compassionate Allowances Program

Prior to the introduction of the Compassionate Allowances program in 2008, all Social Security Disability applications were processed the same way—regardless of the applicants condition. Today, thanks to the Compassionate Allowances initiative, those with severely disabling conditions can be approved for benefits in as little as ten days.

Initially there were only 50 conditions that could be processed under the Compassionate Allowances guidelines. Since 2008, that list has grown to include 200 different disabilities and illnesses. Among these 200 conditions is the classic or infantile onset form of Menkes Disease.

Menkes Disease (Classic or Infantile Onset Form) Condition and Symptoms

Menkes Disease, also referred to as MNK, is a very rare, inherited neurodegenerative disorder. The condition is caused by mutations of the ATP7A gene. These genetic mutations result in an abnormal uptake and abnormal metabolism of copper in the body’s cells. As a result, the body has low levels of copper. Low copper levels can affect the bone structure, skin, blood vessels, hair and the body’s nerve function. When this condition develops during infancy (usually between the ages of 2 to 3 months), it is referred to as Classic Menkes Disease or Infantile Onset Menkes Disease.

The symptoms of Classic Menkes Disease can vary from one person to the next. Common symptoms associated with the condition include:

  • Loss of developmental milestones
  • Floppy muscle tone
  • Seizures
  • Difficulty feeding
  • Failure to thrive
  • Low body temperature
  • Colorless or steel-colored hair
  • Hair that breaks easily

Applying for Social Security Disability Benefits with Menkes Disease (Classic or Infantile Onset Form)

When applying for Social Security Disability benefits due to the classic form of Menkes Disease, you must provide the SSA with sufficient medical documentation in order for your claim to be processed properly. Without the proper medical evidence, your claim may be delayed or even denied.

Necessary medical evidence may include the following:

  • A clinical history and examination describing the diagnostic features of the condition.
  • Diagnostic test results showing low copper and ceruloplasmin levels in the blood.
  • A skin biopsy and fibroblast culture documenting abnormal copper metabolism.
  • Microscopic examination of the hair showing characteristic Menkes abnormalities.
  • Genetic testing showing ATP7A mutations.
  • CT and MRI imaging results showing white matter demyelination, lesions, atrophy, and evidence of rupture or blockage of the arteries.
  • A developmental assessment or psychological testing.

Unfortunately there is no cure for the classic form of Menkes disease. Treatment is focused only on addressing the symptoms of the condition. Early treatment with copper may be able to improve the prognosis of some afflicted patients.

Menkes Disease (Classic or Infantile Onset Form) and Your Social Security Disability Case

It is possible to apply for Social Security Disability benefits without hiring a disability attorney. However, it’s not advisable to do so. The denial of Compassionate Allowance claims are usually the result of forms filled out improperly or a lack of supporting medical evidence. You can avoid these complications by working with an experienced Social Security Disability lawyer.

When you hire a disability lawyer, he or she will work with you to ensure that all of your disability claim forms are filled out correctly and thoroughly. A lawyer will help you to gather the medical evidence that will be necessary to prove to the SSA that your claim qualifies to be processed under the Compassionate Allowances guidelines.

Click here to receive a free legal evaluation of your Social Security Disability claim. You will be connected with an attorney or advocate who can offer professional, legal advice and possibly even increase your chances of approval.