Alexander disease can be very difficult to live with. In fact, most people with the condition don’t live past childhood. Anyone who has the condition or the responsibility of caring for a loved one with it should learn about how to get disability benefits through the Social Security Administration. For people with Alexander disease, going to work is usually impossible for those who live through childhood into adulthood. Thankfully, the Social Security Administration has programs available for those who have this disease. Finding the benefits that are necessary to pay bills is a lot easier for those who seek help with Osterhout Berger Disability Law.
What Is Alexander Disease?
Alexander disease is actually a group of conditions that affect the white matter and myelin sheath in the brain, resulting in brain damage that causes a whole collection of symptoms. Along with the destruction of white matter, Alexander disease also causes the formation of Rosenthal fibers, which are clumps of protein.
This disease also goes by a number of other names, including Dysmyelogenic Leukodystrophy. This disease is actually very rare, with a frequency rate of only 1 in 1 million births. The cause of about 95% of cases of Alexander disease is a mutated copy of the GFAP gene.
Alexander disease occurs in both males and females. Additionally, there aren’t any differences in rates of occurrence between races, geographic locations, economic backgrounds, or cultural differences.
Although this disease was originally discovered in 1949, it’s still very rare. In fact, only about 600 cases have been diagnosed since the time that it was discovered. Doctors also don’t know what causes the myelin sheath to begin to break down.
Unfortunately, the prognosis for people with Alexander disease is poor. Children with the infantile form usually only live to about the age of six years. While most cases have an onset of early childhood, there are some cases in which the onset is in late childhood or even in adulthood, although this is rare.
Symptoms of Alexander Disease
The symptoms that a person with Alexander disease exhibits will depend on whether they have the infantile form or a late-onset form of the disease. The infantile form will occur in people under the age of two years and anything after that age is considered to be late-onset.
Among the many symptoms that people with Alexander disease will experience, there will often be developmental delays, including delays in speech acquisition and some motor milestones, depending on the age of the patient. Some people will also lose developmental milestones when they experience Alexander disease later in childhood. For instance, they might lose motor skills, or they might have some cognitive decline, especially if the onset of the disease is later in childhood. Additionally, abnormally large head size and seizures are also common.
People with type II Alexander disease will usually begin to experience symptoms after the age of four years, but onset could occur at any age. People with this type of this disease won’t experience regression or delay of milestones. They also usually won’t have sezuires or macrocephaly, which is an abnormally large head. Additionally, people with type II Alexander disease will often have a slower cognitive decline, or they might not experience cognitive decline due to the disease at all.
Instead of having many of the symptoms that go with infantile Alexander disease, people with type II Alexander disease will have symptoms related to the bulbar or pseudobulbar region of the brain about 50% of the time. One of these symptoms might include difficulties controlling the face, especially the mouth and tongue. Ataxia is also quite common, affecting about 75% of people with type II Alexander disease, and about 33% of people have spasticity of the muscles.
While Alexander disease is usually split into two different classifications, the reality is that people can actually exist on a spectrum, and the exact symptoms that present themselves can vary from one person to the next.
Treatment for Alexander Disease
Treatment for Alexander disease isn’t standard from one patient to the next. There isn’t a cure for this disease, and the exact course of treatment will be dependent on what symptoms are present in the patient. Usually, people will have some symptoms that can be treated with other medications so that the patient can be more comfortable.
Management of the disease is usually supportive and related to general care of the patient. Medications are often used to control seizures, and some people will need surgery, such as shunting for hydrocephalus or insertion of a feeding tube so that taking care of the patient is easier. Additionally, treatments will often involve prescription antibiotics to help heal infections. Many people also benefit from anti-seizure medication.
Physical therapy might be incorporated into a person’s care to help develop muscles and coordination. Occupational therapy is also an option when treating someone with this disease because it can help people maintain certain skills, and it can help the loved ones of people with this condition better understand how to support the person with Alexander disease.
The genetic basis for Alexander disease was only discovered in 2001, so researchers are still looking for ways to treat the disease.
Disability Benefits for Alexander Disease
Some disabilities are so devastating that people need financial help right away. Thankfully, the Social Security Administration has recognized this need and has put Alexander disease on the list of conditions that will receive assistance through the Compassionate Allowance program. This program allows people who have been diagnosed with certain diseases to receive benefits through the SSA disability benefits program within a matter of weeks instead of waiting several months or even years to receive benefits. This helps adults who have been diagnosed with the condition to get the disability benefits that they need more quickly when they can no longer work, and it can help the families of minors with this condition get benefits so that they can more easily care for their loved one with this disease.
While some adults can live and work for a while without assistance and will therefore sometimes be denied a claim, it’s rare for someone with neonatal or infantile Alexander disease to be denied a claim. But you do need to provide the correct information in a timely fashion. For instance, applicants need to provide proof of a diagnosis along with testing that supports the diagnosis. Applicants also need to provide a listing of the doctors that the patient has seen as well as all of the hospitals that they’ve been to for the condition. Information on the symptoms and the exact ways that it affects their daily lives might also be necessary in some instances.
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 Alexander Disease, please do not hesitate in reaching out. Our team of experienced attorneys are here to help, and your consultation is free.