Yes, ALS and Lou Gehrig’s disease are the same condition. ALS stands for amyotrophic lateral sclerosis, and it became widely known as Lou Gehrig’s disease after the famous New York Yankees first baseman was diagnosed in 1939, forcing his retirement at age 36. The medical name has always been ALS, but the nickname stuck in the United States and remains common today.
Why It Has Multiple Names
ALS goes by different names depending on where you are. In the United States, “Lou Gehrig’s disease” and “ALS” are used interchangeably in everyday conversation. In the United Kingdom and Australia, the same condition is often called motor neuron disease, or MND. Many doctors use “motor neuron disease” and “ALS” interchangeably as well, though technically motor neuron disease is a broader category that includes several related conditions. ALS is the most common form, affecting both upper motor neurons (in the brain) and lower motor neurons (in the spinal cord and brainstem).
Regardless of the label, all of these terms point to the same underlying process: the nerve cells responsible for voluntary movement progressively break down and die, leaving muscles without signals to contract.
What ALS Does to the Body
Motor neurons are the nerve cells that carry commands from your brain to your muscles. In ALS, these neurons degenerate in two places at once: the motor cortex of the brain and the spinal cord. As they die, muscles weaken, twitch, and eventually stop working altogether.
Early signs vary from person to person. Some people first notice weakness in a hand or foot, tripping more often, or difficulty gripping objects. Others develop slurred speech or trouble swallowing as their first symptom. Muscle twitching (fasciculations) is common. The disease typically spreads from wherever it starts to other parts of the body over months to years. Importantly, ALS usually does not affect thinking, memory, or the senses like sight and hearing, though a subset of patients do develop cognitive changes.
Who Gets ALS
About 33,000 people in the United States are living with ALS, and that number is projected to rise above 36,000 by 2030 according to the CDC’s National ALS Registry. It can strike at any age but most commonly appears between 55 and 75.
Roughly 90 to 95 percent of cases are sporadic, meaning they occur without any known family history. The remaining 5 to 10 percent are familial, linked to inherited gene mutations. Two of the most studied genetic culprits are mutations in the SOD1 gene and the C9orf72 gene. Having a family member with ALS increases your risk, but the vast majority of people diagnosed have no relatives with the disease.
How ALS Is Diagnosed
There is no single blood test or scan that confirms ALS. Diagnosis is largely a process of elimination. Neurologists look for a pattern of both upper and lower motor neuron damage that spreads over time, while ruling out other conditions that can mimic ALS, such as spinal cord compression, certain autoimmune disorders, or other motor neuron diseases. Electromyography (a test that measures electrical activity in muscles) and nerve conduction studies are standard parts of the workup. The process can take months, which is one of the more frustrating aspects for patients and families.
Survival and Disease Progression
The average survival from symptom onset ranges from two to five years, with a median of roughly two to three years. After accounting for the time it takes to receive a diagnosis, median survival from the point of diagnosis is about 20 months. These are averages, and individual experiences vary widely. Some people live a decade or longer. Stephen Hawking, the most famous example, survived more than 50 years after his diagnosis, though his case was exceptionally rare.
Recent data from an Italian registry spanning 1995 to 2018 showed a modest improvement in survival over time, with median survival after diagnosis increasing by about 10 percent in the most recent period studied. This likely reflects better supportive care, including nutritional support and breathing assistance, rather than a breakthrough treatment.
Treatment Options
ALS has no cure, but a small number of therapies can slow the disease or manage symptoms. Riluzole, the first drug approved for ALS, has been available since the mid-1990s and modestly extends survival. Edaravone, approved in 2017, targets cell damage and may slow functional decline in some patients.
In 2023, the FDA granted accelerated approval to tofersen (brand name Qalsody) specifically for people whose ALS is caused by a SOD1 gene mutation. This is a narrow slice of the ALS population, but it represents a shift toward genetically targeted treatment. For the majority of patients, care focuses on maintaining quality of life: physical therapy to preserve mobility, speech therapy, devices to assist breathing, and nutritional support as swallowing becomes difficult.
Multidisciplinary ALS clinics, where patients see neurologists, respiratory therapists, dietitians, and other specialists in a single visit, have been shown to improve both quality of life and survival compared to standard care alone.