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Disability Benefits for Larsen's Syndrome

Social Security Disability Lawyers: OC, Riverside & San Bernardino

Larsen Syndrome

What is Larsen Syndrome?

Larsen syndrome is a rare (1 in 100,000), congenital, genetic disorder that affects how the bones develop from birth. Persons with Larsen syndrome usually have characteristic skeletal abnormalities that include dislocations of the hips, knees, and elbows; club feet; and fingers that are square-shaped (“spatulate”). They may have a prominent forehead, midface hypoplasia (flattening of the middle of the face and bridge of the nose), cleft palate, short stature, hypermobile joints or joint contractures, kyphosis or scoliosis of the spine, and heart and kidney problems.

Cognitive function is unaffected.

Cause

The NIH describes the cause of Larsen Syndrome as follows: “Mutations in the FLNB gene cause Larsen syndrome. The FLNB gene provides instructions for making a protein called filamin B. This protein helps build the network of protein filaments (cytoskeleton) that gives structure to cells and allows them to change shape and move. Filamin B attaches (binds) to another protein called actin and helps the actin form the branching network of filaments that makes up the cytoskeleton.”

[Ref: https://ghr.nlm.nih.gov/condition/larsen-syndrome#genes]

Diagnosis

Larsen Syndrome is diagnosed by the symptoms and physical findings, and by genetic testing. Prenatal diagnosis by ultrasound scanning may identify the disorder in utero.

Functional Impairment with Larsen Syndrome

The skeletal abnormalities seen in Larsen Syndrome may affect the function of multiple parts of the body. There can be hearing loss because the ossicles inside the middle ear may be affected. Range of motion may be restricted by contractures, but there also may be hypermobility of certain joints that can lead to the development of premature degenerative osteoarthritis. Kyphosis or scoliosis of the spine can affect lung expansion and cause breathing problems. The spinal cord can be compressed and lead to weakness in the arms or legs. There are also cardiac and kidney problems that may be associated with Larsen Syndrome.  Some cardiac problems may be severe and can cause death.

Cardiac problems include bicuspid aortic valve (which can lead to aortic stenosis), mitral valve regurgitation, tricuspid valve problems, atrial septal defect (ASD) and aortic dissection. 

Many patients with Larsen Syndrome who survive into adulthood typically have “moderate” sitting/lifting/carrying restrictions and” moderate to severe” standing/walking restrictions.

Treatment

Surgical treatment is not uncommonly required to correct skeletal and cardiac abnormalities. Joint replacement of the hips or knees may be required because of frequent dislocations and premature degenerative arthritis. Depending on its manifestations, Larsen Syndrome may cause death at an early age. On the other hand, persons with Larsen Syndrome can survive into adulthood, albeit with functional restrictions related to their abnormalities.

Getting Long-Term Disability Benefits with Larsen Syndrome

The Supplemental Security Income (SSI) program provides payments to blind or disabled children who live in households with low income and limited resources. To get benefits, your child must be unmarried and <18 years old; or if your child is 18-19 years old and a student (not higher than 12th grade); or if >18 years old, with a disability that began before age 22.

Benefits will continue at age 18 to a child who's disabled. If you are an adult who becomes disabled from Larsen Syndrome and are applying for long-term disability (LTD) benefits for the first time, you may be eligible to receive LTD benefits depending on the documentation of your functional restrictions and limitations in your medical records.

At Law Med, we can help.

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