Getting Disability for Turner Syndrome and Related Problems

Disability benefits are available for those whose Turner Syndrome causes severe limitations.

By , J.D., University of Missouri School of Law

Girls and women diagnosed with Turner Syndrome, a genetic abnormality resulting in a missing or incomplete X chromosome, can qualify for Social Security disability benefits if they experience symptoms that substantially interfere with their daily lives. While the majority of those with Turner Syndrome can lead healthy and productive lives, in some cases the disorder can cause limitations severe enough to give rise to a disability claim.

Turner Syndrome: Symptoms, Diagnosis, and Treatment

Turner Syndrome is a genetic condition, but it is usually not inherited. In fact, females born with Turner Syndrome are rarely able to get pregnant naturally due to underdeveloped ovaries, although some affected women can bear children with donated eggs. Diagnosis can occur prior to birth through ultrasound or amniocentesis, or postnatally through blood testing. Turner syndrome is sometimes alternatively known as Ullrich–Turner syndrome; 45,X; orgonadal dysgenesis.

Girls with Turner Syndrome (TS) often display distinct facial features, including drooping eyelids, small lower jaw, and low-set ears, many of which may be noticeable from birth. In addition, girls and women with TS are generally shorter in stature than the average female and may have smaller fingers and toes. While most girls hit a growth spurt during puberty, those with Turner Syndrome may find their growth delayed or reduced. Women with Turner Syndrome are on average about eight inches shorter than non-affected women.

In addition to physical abnormalities, Turner Syndrome can affect a wide variety of the body's systems, from hearing problems to heart defects to thyroid issues. Cognitive and social abilities may also be impaired, with mathematics and spatial reasoning often proving especially challenging. Turner Syndrome is also associated with increased risk of attention deficit hyperactivity disorder (ADHD), which can be less responsive to treatment than in other children.

Hormone replacement therapy can promote physical development and reduce the risk of osteoporosis. The other symptoms of Turner Syndrome may be treated on an individual basis.

Social Security's Blue Book Listings and Turner Syndrome

Children. In order to qualify for disability benefits, children with Turner Syndrome must meet the requirements of one of Social Security's Blue Book Listings or display "marked and severe" functional limitations. While there is no specific listing for Turner Syndrome in the Blue Book, the condition may be evaluated, depending on the symptoms present, under a number of listings, including:

If a child meets the criteria found in these listings, or displays limitations that are just as severe as these listings, the child will be entitled to Supplemental Security Income (SSI) benefits.

Adults. Similarly, adults with Turner Syndrome are evaluated based on the Blue Book Listings most relevant to their symptoms. For example, those with heart problems would be evaluated under Listing 4.00 for the cardiovascular system, while those with osteoporosis could be evaluated under Listing 1.06 or 1.07 for broken bones. Adults who fail to meet a listing can still qualify for benefits based on a medical-vocational allowance if their condition prevents them from performing substantial gainful activity (SGA).

Disability Benefits Through a Medical-Vocational Allowance

Adults who lack the Residual Functional Capacity (RFC) to perform full-time work can receive benefits through a medical-vocational allowance. Your RFC is an assessment of your maximum work-related abilities despite your impairments. In determining whether you qualify for an allowance, Social Security will consider your age, educational level, past work, strength rating, and any other work-related limitations that could prevent you from performing SGA. If you're able to prove that you cannot perform your past work or any other jobs in the national economy, Social Security will find you disabled.

Proving Your Disability Case Based on Turner Syndrome

A diagnosis of Turner Syndrome by itself is not enough to qualify you for disability benefits. You must show that your condition is severe enough to either meet a listing or prevent full-time work. (Children must prove they meet or equal a listing, or that they suffer marked and severe functional limitations.) For both children and adults, it is imperative to provide medical evidence documenting the nature and severity of your impairments.

For children, birth records and other medical evidence indicating the diagnosis and extent of your symptoms will be helpful. Clinic notes and diagnostic testing of speech therapists, audiologists, behavioral therapists, and others can also be persuasive. Non-medical evidence such as school records, IEPs, and letters from teachers and parents may also prove beneficial.

Likewise, adults should ensure that Social Security has all relevant medical records documenting their impairments. In addition, letters from former bosses and coworkers can also help demonstrate the extent of your past problems on the job.

Both children and adults should seek medical opinions from their treating primary care physicians and/or specialists. For children, it is essential that the medical professional address whether the patient "functionally equals" a disability listing. A disability attorney can help you correspond with your child's doctor to make sure that the right questions have been asked. Adults should ask their doctors to complete an RFC form to address any physical and mental symptoms that could impact work performance. Because some of those with Turner Syndrome are in fact able to work, it's critical that you hire a disability attorney to help persuade Social Security of the seriousness of your impairments.

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