Why is ALS called Lou Gehrig's disease?

Famous People Who Have or Have Had ALS

ALS is a debilitating disease that currently has no cure. Several well-known people have been diagnosed with it over the years, including renowned scientist Stephen Hawking and San Francisco 49ers player Dwight Clark.

What is ALS?

Amyotrophic lateral sclerosis (ALS) is a rare disease that damages the nerves, gradually destroying them over time. This relatively rare condition gained worldwide exposure following the ‘Ice Bucket Challenge‘ which went viral on social media back in 2014. Prior to this hugely popular social media trend, many people were unaware of ALS and what the disease involves.

In some cases, people first become aware of a seemingly rare medical condition when someone they know has been diagnosed with it. This doesn’t necessarily have to mean a friend or family member. Often it is a high profile celebrity whose diagnosis can result in more people becoming aware of a disease for the very first time.

This is certainly the case with ALS.

ALS is often referred to as Lou Gehrig’s Disease, named after the baseball player who was diagnosed with it in his late 30s. As you would imagine, the use of the term ‘Lou Gehrig’s Disease’ is much more widespread in the USA where he was a very high profile sports star. But this just goes to show how a famous person being diagnosed with a disease can drastically raise awareness of it.

Here we take a closer look at celebrities and other high profile public fiures who have had or currently have the disease, including Lou Gehrig himself.

Lou Gehrig

It’s long been thought that Lou Gehrig was the first well-known celebrity to get ALS, which would make sense seeing as his name is now so closely associated with the condition. Famed for recovering and playing on after injury, Gehrig played baseball professionally for 17 years and participated in more than 2,000 consecutive games for the New York Yankees.

During the 1938 season, Gehrig began to notice changes in his performance and, by the start of the ’39 season, things were obviously not right with his physical condition. Following medical tests, it was shown that he had increasing paralysis and loss of function in his limbs. He played his last game in April 1930 and died at the age of 37 in 1941.

Stephen Hawking

Professor Stephen Hawking

The Gehrig story demonstrates the extreme pace that ALS can affect an individual once it is diagnosed. Whilst this is certainly true for the majority of cases, there are exceptions, especially when the disease is discovered in younger adults.

Famed scientist, Stephen Hawking was in his early twenties when he was first diagnosed with ALS and, despite being confined to a wheelchair for the majority of his life, he lived to the age of 76. With the help of technology he was able to communicate effectively and continued to contribute to the scientific world right until the later stages of his life.

Ezzard Charles

Ezzard Charles was a boxer nicknamed the Cincinnati Cobra who became world champion. He boxed in three categories, heavyweight, light heavyweight and middleweight. Financial issues meant that Charles felt he had to continue boxing for much longer that what would recommended these days and as a result, he lost 13 of his final 23 bouts.

Charles was diagnosed with ALS in 1968 when he began to have problems moving his legs. He became severely disabled and former opponents took part in fundraisers to provide for his healthcare. Charles died in 1975 at the age of 53, just seven years after he was initially diagnosed.

Dwight Clark

Dwight Clark played for the San Francisco 49ers and played for two teams that won the Super Bowl. In 2015, he began to have problems with weakness in his left hand and was eventually diagnosed with ALS. He was actually the fourth player for the club to have been diagnosed with the disease.

Clark died of the disease just three years later in 2018. This is unfortunately quite typical of ALS, where half of those with the disease die within three to five years of their diagnosis.

Mao Zedong

Mausoleum of Mao Zedong
Mausoleum of Mao Zedong in Beijing

Chairman Mao is considered by many as a forefather of modern day China, although he certainly also has his critics. Born to a peasant family in 1893, he became the revered leader of the communist party which overtook the country and which finally created the People’s Republic of China.

Mao was diagnosed with ALS late in life after his gait became more unsure and he began to have trouble breathing. Whilst it was well-known that he had Parkinson’s Disease, it was kept secret for a long while that he also had ALS. Mao finally died of a heart attack in September of 1976 at the age of 82.

Tim Green

Tim Green is another American footballer who has been diagnosed with ALS. He retired in 1993 and became a television commentator and author. His condition is a slow-moving variety of ALS and since his diagnosis, Green has written about the disease and been involved in fundraising in the US.

Jon Stone

Jon Stone is best known for helping to create the hit children’s television series Sesame Street. The author and director was diagnosed in his sixties and passed away from ALS at the age of 65 in 1997. Whilst some of the celebrities who have had ALS were involved in contact sports, others like Stone and scientist Stephen Hawking were not.

Steve Gleason

Gleason is another former professional football player who has been diagnosed with ALS. Since his diagnosis, Gleason has become an advocate for research and raising awareness of the disease. He is without doubt a positive example of how it’s possible to turn a challenging health problem into a situation which will help others who will be affected by similar experiences in the years to come.

Now confined to a wheelchair, Gleason continues to fight for the right of people with ALS to access affordable speech-generating devices.