It’s Wednesday and for many of us that means one thing: Empire is on tonight!
The highly anticipated TV show follows the hectic life of Lucious Lyon, played by Terrence Howard, who is a music mogul who seems to have a harder time managing his own family– specifically three scheming sons and an ex-con wife– than managing his business and music artists.
For one hour every week, we tune in for the jaw-dropping storylines that include Cookie, his ex-wife, testifying for the feds and his youngest son Hakeem’s love triangle. However, while Lucious is attempting to cement his mogul status, there is one part of his narrative that turns a serious corner– his devastating ALS diagnosis.
ALS which stands for Amyotrophic Lateral Sclerosis is a neurodegenerative disease and for years was more commonly know as “Lou Gehrig’s disease,” after the famous New York Yankee from the 1920s and 1930s who succumbed to the disease. Other notables such as Jacob Javits, former NY US Senator in the 1950s; and Jon Stone, the creator of Seasame Street, also died as a result of ALS. Last year, a younger generation became familiar with ALS when celebrities participated in the Ice Bucket Challenge on social media to raise money for ALS research. More recently, longtime North Carolinian news anchor Larry Stogner announced his ALS diagnosis in an emotional resignation.
ALS is a serious condition that scientists are still working to figure out its cause and treatment. According to the ALS Association, roughly 5,600 people are diagnosed with ALS every year, and ALS is responsible for nearly two deaths for every 100,000 people every year. It is estimated that anywhere between 20,000 – 30,000 people have ALS at an given time, according to the Centers for Disease Control and Prevention (CDC). The average age of diagnosis is between 55-75 with people. And although not as common, people have been diagnosed in their 20s.
Those with ALS normally live three to five years after their diagnosis, with younger patients at times living a little longer. Only about 5-10% of those with ALS inherited it from their family, and the incidence is lower among those of African descent, Latinos, and Asians than whites.
The disease is progressive in nature and therefore gets worse over time. ALS damages nerve cells known as motor neurons that are responsible for us being able to move our body at our own will or voluntarily. When these cells are damaged or die, the brain can no longer send signals to control and move the body’s muscles. With ALS, the body increasingly loses its ability to control movements and can become increasingly paralyzed. Even though the body becoming immobile, the mind still functions clearly.
Early symptoms include increasing muscle weakness and involuntary shaking of the arms and legs (like when Luscious can’t steady his hand to shave or stop his legs from involuntarily shaking), and difficulty speaking, swallowing, or breathing. The majority of people die from respiratory failure.
There is no cure yet for ALS, but there are plenty of examples of real people with ALS living with dignity and courage. Renowned theoretical physicist and cosmologist Stephen Hawking has lived with ALS since the 1960s and even while paralyzed, give lectures and write books.
As an effort to help scientists learn as much as possible and find a cure, Congress, in 2010, mandated the development of the National ALS Registry as a way to track the lives of those who are diagnosed with ALS in this country. It is actually the only registry in health mandated by Congress and is hosted by the Centers for Disease Control and Prevention (CDC). While there is a solid attempt to have anyone with ALS register, it is still voluntary.
Only time (and the writers) will tell what’s in store for Lucious Lyon and how his disease will progress. One thing is clear that even though shows like Empire are filled with climatic levels of drama, it has elevated the conversation around a disease that has historically been shoved behind the curtain by thrusting it into the lights of primetime.