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Compassionate Allowances - Congenital Lymphedema

When lymphedema is due to defects present from birth, it is considered congenital, and is a condition that can therefore affect individuals at any age. Many who have congenital defects will experience issues early in childhood, though some do not experience problems until much later in life.

In its most severe forms, congenital lymphedema that develops in children and infants is considered inherently disabling. It is additionally a condition the Social Security Administration recognizes as part of its Compassionate Allowances (CAL) program, which is designed to cut through many of the administrative delays associated with the application and review process for Social Security Disability (SSD) benefits.

Symptoms and Treatments of Congenital Lymphedema

Lymphedema is a condition in which abnormalities in the lymph system cause lymphatic malfunctions, including swelling in the lymph vessels, ducts, and glands. Lumps may develop in various locations throughout the body, though the most common include the limbs, face, and genital area.

Other common symptoms that appear with Congenital Lymphedema include:

  • Dull, ache pains in the affected body area
  • Swelling in the limbs, even when obvious lumps are not present
  • Tightness and numbness in the skin
  • Difficulty moving arms and legs
  • Skin changes, including hardening or thickening of tissue
  • Chronic infections of the skin
  • Decreased immune function and frequent infections

Infants born with Congenital Lymphedema may additionally have other birth defects, including the incomplete formation of other body organs. Congenital heart defects are commonly present in the more severe cases as well.

There is, unfortunately, no cure for Congenital Lymphedema. Treatments for the condition instead focus on reducing and managing symptoms, and may include:

  • Palliative surgeries
  • The use of compression bandages
  • The manual drainage of lymph fluid
  • Lymphatic massage therapy

Applying for SSD with Congenital Lymphedema

When applying for SSD benefits for your child with Congenital Lymphedema, it is important to understand that children approved for disability benefits are paid through Supplemental Security Income (SSI) rather than Social Security Disability Insurance (SSDI). SSI is a need-based program, which means there are financial limitations among the technical criteria for eligibility. As such, the SSA will evaluate your finances when determining if your child qualified to receive disability benefits through SSI.

Additionally, while Congenital Lymphedema is considered a CAL approved condition, medical evidence is still required for proving disability. In determining if your child’s application meets the medical requirements for SSI, the SSA will compare the evidence and records in your application and your child’s medical documentation to listing in the Blue Book. The Blue Book is the manual of disabling conditions and the evidentiary requirements for substantiating disability claims.

There is no dedicated listing for lymphedema for adults or for children. There are however guidelines for how the SSA evaluates child lymphedema claims. These guidelines appear in Section 104.00 F, which although it is entitled “Evaluating Other Cardiovascular Impairments”, actually contains the details of which listings are used for comparing lymphedema documentation to other listed conditions.

Comparable listings that may be reviewed by the SSA in evaluating a Congenital Lymphedema claim include:

  • Section 4.11, Part A of the Blue Book – Adult listing for chronic venous insufficiency
  • Section 101.02A, Part B – Child listing for major dysfunction of a joint, due to any cause
  • Section 101.03, Part B – Child listing for reconstructive surgery or surgical arthrodesis of a major weight-bearing joint

Getting Assistance with Your Congenital Lymphedema Disability Claim

Although it is uncommon for CAL condition disability applications to not meet medical eligibility criteria for SSD benefits, it does occasionally happen. Usually, such denials are due to lacking or missing information in the application documents or medical records submitted. Getting help from a disability advocate or attorney with your application for Congenital Lymphedema may prevent unnecessary delays in the processing of your claim and reduce the likelihood of denial as well.