Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease is a neurodegenerative brain disease. It has multiple causes, such as various mutations, and concussions and head trauma may also play a role. In over 90% of cases of ALS the cause is unknown. Only about 5-10% of cases of ALS are inherited from a person’s parents.
There is no cure for ALS. The average life expectancy for somebody with ALS is about 2-5 years. There is one medication, Riluzole that can extend some people’s lives for about 2-3 months. There are some forms of ALS that take significantly longer, but most people diagnosed with ALS sadly do not have long to live.
ALS usually starts with subtle muscle weakness. It can also start with shaking, tripping, or speech problems. However, in most cases it starts with muscle weakness in the arms and legs. Over time the muscle weakness worsens, leading to difficulty swallowing, walking, and even breathing. As ALS progresses patients must use wheelchairs, be unable to speak, and eventually need assistance breathing. Most people with ALS die because of respiratory failure.
ALS is difficult to diagnose. The symptoms of many other diseases can easily be mistaken for ALS. Patients undergoing the process of diagnosis usually get two or three opinions as well as a variety of tests to determine it is in fact ALS and not another disorder.
Most treatments for ALS are focused on improving a patient’s immediate quality of life. Treatments include: physical therapy, speech therapy, nutritional support, and eventually end of life care, sometimes including mechanical respiration.
There are a lot of ethical issues with treating ALS. Since patients do not lose brain function, physician assisted suicide is often brought up. There is also the cost of treatment. Riluzole, the only FDA approved medication for ALS is over $1000 a month. ALS is already a horrible disease. The financial and emotional burdens that falls on family members only make everything worse.
ALS is a tragic disease. It is important that people know about it so that people with ALS can access the support and care that they need. Some awareness efforts, most notably the ice bucket challenge, have been successful. Still, there is work to do to do to research and treat ALS.