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Compassionate Allowance - DeSanctis Cacchione Syndrome

The Compassionate Allowances program helps the Social Security Administration (SSA) to better serve some of the most severely disabled claimants by identifying conditions which always qualify for disability benefits and expediting claims based on those conditions. The program began in 2008 with 50 conditions and has been periodically evaluated and expanded. At the time of this writing, the SSA recognizes 201 conditions for compassionate allowance listings.

The most recent additions occurred on December 1, 2012 and included 30 new conditions. One of the newly recognized conditions was DeSanctis-Cacchione syndrome.

DeSanctis Cacchione Syndrome - Conditions and Symptoms

DeSanctis Cacchione syndrome is an extremely rare genetic disorder which shares many of the symptoms of xeroderma pigmentosum, a condition which causes difficulty recovering from skin damage caused by UV rays. People with DeSanctis Cacchione need to be extremely careful about exposing themselves to direct sunlight or other sources of ultraviolet light. In extreme cases, people with DeSanctis Cacchione may not even go outside during daylight hours.

Other symptoms associated with DeSanctis Cacchione syndrome include:

  • Deafness
  • Mental retardation (usually progressive)
  • Stunted growth
  • Retarded sexual development
  • Microcephaly
  • Ataxia
  • Choreoathetosis
  • Quadriparesis
  • Skin tumors
  • Skin atrophy
  • Unusual skin pigmentation
  • Shortened Achilles’ tendons

In most cases, DeSanctis Cacchione syndrome is detected and diagnosed in infants. Few with this condition live to adulthood. Most treatments focus on coping with the conditions symptoms. Treatment can vary considerably depending on which symptoms are experienced and how severe their affects are. Treatments are typically performed by dermatologists, neurologists, and ophthalmologists, depending on which symptoms are being treated.

Applying for Social Security Disability with DeSanctis Cacchione Syndrome

If your child has been diagnosed with DeSanctis Cacchione syndrome, you may be able to qualify for Social Security disability benefits. Your child will automatically qualify medically for any benefits to which you are entitled based on the fact that his or her condition qualifies for a compassionate allowance. Depending on your assets and income, you may be able to get help through programs such as SSI and/or Medicaid.

In most cases, you will be eligible for back pay dating to the birth of your child, since DeSanctis Cacchione is a genetic condition which your child has had since before birth. As with other Social Security claims, you will need to provide medical records which support your claim that your child has DeSanctis Cacchione syndrome. This typically incudes:

  • Records of all examinations which pertain to your child’s DeSanctis Cacchione syndrome diagnosis. This should include all lab results pertaining to the diagnosis and a description of physical features which led your doctor to diagnose DeSanctis Cacchione.
  • Developmental/mental testing results showing any intellectual or developmental delays.

Your DeSanctis Cacchione Syndrome Disability Case

Many parents of children with debilitating conditions find it beneficial to have a Social Security disability lawyer go over the details of their Social Security disability claim. Your Social Security lawyer can give you a solid idea of what kind of help you can expect based on your individual circumstances.

Your child will qualify medically for benefits. As long as your claim is filed correctly and contains all of the needed medical documentation, you should be approved for the benefits you are entitled to within three weeks of your application.