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Allan-Herndon-Dudley Syndrome

Osterhout Berger Daley > Disabling Conditions > Allan-Herndon-Dudley Syndrome

Allan-Herndon-Dudley syndrome is a disease that makes it impossible for people to work. In fact, most people with this condition will need someone to care for them because moderate to severe intellectual disabilities are part of the condition. Nonetheless, getting disability benefits for someone with Allan-Herndon-Dudley disease is very important because they need the financial resources to care for the individual with this disease. Anyone who is a caregiver for someone with this condition should learn about the disability benefits that the Social Security Administration offers to individuals who are able to show that they have this condition.

What Is Allan-Herndon-Dudley Syndrome?

Allan-Herndon-Dudley syndrome is a condition that affects males mostly because it’s on the X chromosome and is a recessive gene, meaning that females usually don’t get the condition because girls have the other X chromosome that will cancel out the recessive gene mutation. It’s a rare condition that affects the brain and causes moderate or severe intellectual disabilities and motor problems. Onset is before birth, and the condition affects development while still in the womb. This condition is very rare, with only 25 families having been affected by the condition worldwide.

Allan-Herndon-Dudley Syndrome is caused by a mutation in the SLC16A2 gene. This gene is responsible for producing proteins that carry the T3 hormone into the nerve cells during the development of a fetus. Because this protein isn’t made, the T3 hormones accumulate in the blood and normal development is disrupted. The accumulated T3 hormones cause toxicity and damage organs. One of the ways that doctors diagnose this condition is by measuring the T3 levels in the blood, which will be elevated, and the T4 levels, which will be lower.

Children with this condition are born appearing normal, but symptoms begin to show themselves shortly after birth. Namely, children will have poor muscle tone, have difficulty holding up their heads, which is partly due to the poor muscle tone, and miss physical developmental milestones as they get to be a few months old. As symptoms progressively get worse the older the child gets, wheelchair dependency becomes more likely as the child gets older and reaches adulthood.

Symptoms of Allan-Herndon-Dudley Syndrome

Intellectual impairment is one of the most common types of symptoms that people with Allan-Herndon-Dudley syndrome are likely to experience. For instance, many people with this condition will have speech delays and aphasia, which is a type of condition in which people can’t recall certain words. Many people will also experience developmental delays and overall poor growth. Most boys who are born with this condition will have generally less muscle tone and will have strength issues. In fact, the abnormal muscle tone will usually start with hypotonia, which is a lack of muscle tone, but it will later evolve into spasticity, which is a rigidity that comes from damage to the neural pathways.

Urinary incontinence and bowel incontinence are common. A joint contracture is when the connective tissue, which is supposed to be flexible and stretchy, becomes rigid. People with Allan-Herndon-Dudley syndrome often develop joint contractures, which will also make moving more difficult. General joint stiffness, large ears, and a gaped jaw appearance are also common. Cerebral calcification, bulging eyes, and drooping upper eyelids are less common than some other symptoms but still affect up to about 29% of people with this condition. Type I diabetes is more common in people with this condition, too.

Because of the excess hormones in the body, people with this condition can often be prone to symptoms that are similar to those found in people with hyperthyroidism. Namely, they’ll also be more likely to be prone to weight loss, heat intollerance, heart palpitations, and fatigue. Finally, an abnormal folding of the ears is also common for people with Allan-Herndon-Dudley syndrome.

Treatment for Allan-Herndon-Dudley Syndrome

There is no known cure for Allan-Herndon-Dudley syndrome, so treating symptoms is the most common type of treatment for this condition. For instance, one of the first concerns that caregivers of someone with Allan-Herndon-Dudley syndrome should be concerned with is providing supportive care and reducing symptomatology. Therapies should help people with this condition function better and live a more comfortable lifestyle. Speech therapy can help people who are experiencing aphasia and other types of speech problems communicate more effectively. Occupational therapy can help the patient’s loved ones learn more about the condition and help set up the environments that the patient is in to be as conducive as possible to provide a better life for the patient. Physical therapy is often used to help build muscle tone and increase strength so that the patient is able to walk and do other everyday activities for themselves.

People also need treatment for seizures and dystonia, which is a type of muscle contracting that causes repetitive movements and abnormal postures. Dietary supplements can also help people with this condition live a more comfortable life.

In addition to addressing some of the symptoms of this condition, finding ways to stabilize hormones can be helpful. While there isn’t a way to undo the damage that the hormone imbalance did gestationally, it’s sometimes possible to even out the T3 and T4 hormones by restoring TH signaling. This therapy ideally will begin as soon as possible, even in gestation if it’s already known that the fetus has Allan-Herndon-Dudley syndrome.

Disability Benefits for Allan-Herndon-Dudley Syndrome

Getting disability benefits for Allan-Herndon-Dudley syndrome is a lot easier than some other conditions because it’s one of about 200 listings that falls under the Compassionate Allowance program. This program was created to expedite the process for people with conditions that are particularly difficult to work with and are likely to qualify a person for benefits anyway. In fact, most people who are applying for disability benefits with the SSA will be able to get benefits within a few weeks to a couple of months if they have this condition versus the several months or even years that they would have had to wait if they had applied with another condition that isn’t on the list for the Compassionate Allowance program.

People with this condition will automatically qualify because the SSA recognizes that anyone with this condition will fit the criteria. Applicants or their loved ones still need to provide evidence showing that they have the condition. Namely, the doctor must give the tests that show evidence for the diagnosis. For instance, they must provide the SSA with blood testing that shows elevated levels of the T3 hormone and lower levels of the T4 hormone. The SSA will also want the doctor’s description of symptoms that are consistent with Allan-Herndon-Dudley syndrome. Plus, they’ll want the tests that show that there is a mutation in the genes that would align with this condition.

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