Although most people with Aicardi-Gourtieres syndrome are children, there are some people who live into adulthood with the condition. Aicardi-Gourtieres syndrome is a serious condition that makes it impossible for most to work. Anyone who has this condition or has a loved one with the condition should learn about the benefits that might be available to those who qualify. When you work with Osterhout Berger Disability Law, you’ll have the opportunity to learn more about how you can help a loved one with this condition, and we can help you get the disability benefits that you or a loved one needs.
What is Aicardi-Goutieres Syndrome?
Aicardi-Goutieres syndrome is a condition that people are born with, and most people with it don’t live past childhood. This condition affects the white matter in the brain and damages the myelin sheath around the nerves. The immune system attacks the myelin sheath, which speeds the transmission of signals in the brain and protects the nerve. Some infants that are born with it will exhibit signs at birth. For children who begin to exhibit symptoms a few years after birth or for those who exhibit lesser symptoms, they might live into adulthood.
Aicardi-Goutieres syndrome is a condition that affects the brain, skin, and immune system. While about 20% of newborns exhibit symptoms within the first few days of birth, many don’t experience any symptoms until several months or even a year or more later. Of the children who are born with symptoms, an enlarged liver is one of the primary symptoms. In fact, many of the symptoms are similar to infection even though no infection is present. Because of this, it’s often known as a mimic of congenital infection.
This condition is very rare, even though we don’t know an exact prevalence rate, but there is some information that’s known about the cause. A gene mutation that’s on both parents’ chromosomes that they pass on to the child, otherwise known as an autosomal recessive gene, is responsible for this condition.
Symptoms of Aicardi-Goutieres Syndrome
The exact symptoms can vary according to when the child begins to exhibit symptoms, but brain damage is one of the most common consequences of Aicardi-Gourtieres syndrome. More specifically, a variety of symptoms can show up, including microcephaly, which is a condition in which the baby’s head is significantly smaller than what it should be. This is often due to abnormal brain development.
Peripheral spasticity, which is when muscles become stiff and weakened, and truncal hypotonia, which is when a person has decreased muscle tone, are two other common symptoms. Along with this, some people will also have poor head control. Conversely, some people with Aicardi-Goutieres syndrome will experience dystonia, which is involuntary muscle contractions that can cause twisting or repetitive movements.
Red lesions that are itchy and painful will sometimes appear on the hands, feet, and ears. Additionally, people with this condition will have profound intellectual disabilities, which are caused by brain damage that occurs early in life.
Children with early-onset Aicardi-Goutieres syndrome will also likely have more specific symptoms. For instance, newborns that exhibit symptoms right after being born are more likely to have some elevated liver enzymes that often look like viral infections. They’re also more likely to experience neurological defects and an enlarged liver and spleen immediately after birth.
Those with late-onset Aicardie-Goutieres syndrome are more likely to experience a different set of symptoms. Late-onset Aicardie-Goutieres syndrome is defined as someone who develops normally for weeks or even months after being born but experiences symptoms sometime during infancy. Seizures, irritability, visual impairment, joint stiffness, inconsolable crying, intermittent fever, loss of development skills, and developmental delay are other symptoms of late-onset Aicardie-Goutieres syndrome.
Treatment for Aicardi-Goutieres Syndrome
Unfortunately, there isn’t a way to avoid the consequences of the Aicardi-Goutieres syndrome through treatment. There are, however, ways to care for the person with this condition. Because all children with Aicardi-Goutieres syndrome will have different symptoms, each treatment plan will be specifically tailored to their needs.
For instance, children with this condition should be monitored for things like glaucoma with yearly testing. Additionally, they should be monitored for an underactive thyroid, diabetes insipidus, pulmonary hypertension, cardiomyopathy, problems with platelets in the blood, problems with blood vessels in the brain, and problems with the bones, including scoliosis and dislocated joints.
Physical therapy and speech therapy are often helpful for children with this condition because these treatments can provide the training that can lessen the weakness that AGS often causes. A physical therapist can work with a child with AGS to maintain strength and flexibility, and a speech therapist can work with the child to overcome feeding and speaking difficulties.
Some children with this condition might need chest physiotherapy treatment problems with the respiratory system. Additionally, there are some children who might have difficulties getting enough nutrition, so some infants might need special accommodations to compensate for eating, such as a feeding tube. Some children with Aicardi-Goutieres syndrome will also need anticonvulsants for seizures. The need for many of these treatments will depend on the severity of the condition, so each child will receive different types of care depending on their symptoms.
Disability Benefits for Aicardi-Goutieres Syndrome
Because Aicardi-Gourtieres syndrome makes working impossible and affects people at such a young age, it’s included in the Compassionate Allowance program that the SSA has for people with certain conditions. Going through the application process to receive disability benefits through the SSA is time-consuming. In fact, many people wait as long as two years before receiving their first disability check. That’s why the SSA has recognized that financial help for people with some conditions needs to be expedited. People with Aicardi-Gourtieres syndrome can receive benefits in as little as three weeks instead of waiting more than a year of having the condition just to apply.
People who are applying for a child with Aicardi-Goutieres syndrome should be aware of what kinds of benefits are available to them while they’re caring for their child with this condition. Taking care of a child with this condition can be a full-time job, and knowing what kinds of information that you’ll need to return can improve the process. It’s uncommon for a claim that qualifies under the Compassionate Allowance program to be denied, but a disability insurance attorney from Osterhout Berger Disability Law can greatly improve your chances of having a favorable outcome. When you work with one of our attorneys, you can know that all of the paperwork has been filled out completely and correctly, and you’ll be certain that we will ensure that everything is submitted on time so that your claim is processed correctly.
How We Can Help
There are several ways in which the team at Osterhout Berger Disability Law can help you receive the benefit you deserve. We help individuals who need to…
- Apply for Social Security Benefits and want to ensure everything is done right the first time
- Appeal a denial of Social Security Disability Benefits
- Appeal an existing denial of Long Term Disability (LTD) Benefits
If you are facing one of these situations due to Aicardi-Goutieres Syndrome, please do not hesitate in reaching out. Our team of experienced attorneys are here to help, and your consultation is free.
