How Long Can You Live With ALS? - MedicineNet

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• Introduction
  • What is ALS?
• ALS Life Expectancy
  • What is the life expectancy of a person with ALS?
• Causes
  • What causes ALS?
• Stages
  • What are the 7 stages of ALS?
• Treatment
  • Can ALS be cured?
• Prevention
  • Can ALS be prevented?
• FAQs
  • Frequently asked questions (FAQs) about ALS life expectancy

What is ALS?

A person with ALS may live for about two to five years from the time of diagnosis.

Amyotrophic lateral sclerosis (also called ALS or Lou Gehrig's disease) is a progressive and fatal disease, attacking the cells in the nervous system (neurons) that control voluntary movement. Jean-Martin Charcot, a French neurologist, discovered the disease in 1869.

The nerve cells that control voluntary movement are called motor neurons. ALS affects and kills motor neurons. Neuronal death results in the inability of the brain to control the muscles of the body. This leads to a progressive decline in the ability to talk, write, pick up or hold things, swallow, and ultimately breathe (all processes controlled by muscle).

There is no cure for ALS. ALS survival rate varies, but most patients live only two to five years from the onset of symptoms. Some individuals may live longer. For example, Stephen Hawking lived with the disease for decades. The ALS mortality rate is high because the disease is relentlessly progressive.

Is ALS genetic? Yes, in about 5%-10% of cases, ALS is inherited, known as familial ALS. This form is caused by mutations in specific genes, like C9orf72, SOD1, TARDBP, or FUS. The remaining 90%-95% of cases are sporadic ALS, meaning they occur with no clear family history. While the ALS life expectancy is similar for both forms, genetic ALS may appear earlier and progress differently in some patients.

ALS most commonly affects whites, males, and people over the age of 60 years. Recognizing the early signs of ALS, such as muscle weakness, twitching, or slurred speech, can help in earlier intervention.

What is the life expectancy of a person with ALS?

On average, a person with Amyotrophic Lateral Sclerosis (ALS) may live for about two to five years from the time of diagnosis. This is the average life expectancy and some patients may live longer. More than half of the people with ALS live for more than three years from the time of diagnosis.

ALS life expectancy by age

The average ALS life expectancy after diagnosis is typically two to five years, and many people will eventually require full-time care. Age at onset plays a major role in disease progression; older individuals often experience a faster decline and shorter survival, while those who develop ALS at a younger age often live longer.

This ALS life expectancy chart offers a simplified view of estimated survival trends by age and helps answer the common question, "How long can you live with ALS?"

Age at Onset	Estimated Survival	Notes
All ages (average)	2-5 years	Median life expectancy of 2.5 years from symptom onset
Under 65 (overall)	3.3 years (40 months)	Median survival from onset
Under 40	Often 10+ years	Rare, slower progression in many cases
50-59 years	1.4 years (17 months)	Faster decline than younger onset
60-69 years	1.1 years (13 months)	Risk of rapid decline in the ability to breathe
70+ years	0.7 years (8 months)	Shortest survival, often due to faster disease course

QUESTION

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What causes ALS?

Amyotrophic lateral sclerosis (ALS) has two types:

1. Sporadic ALS (SALS)
2. Familial ALS (FALS)

Sporadic ALS (SALS)

Sporadic ALS (SALS) is the most common form of the disease in the United States. It accounts for 90 to 95 percent of all cases of ALS. The cause of sporadic ALS is unknown.

Familial ALS or (FALS)

If someone in your family has ALS, you may wonder, "Is ALS genetic?" The answer is yes — in cases of familial ALS (FALS), which is seen in 5%-10% of all ALS cases in America.

People with familial ALS inherit the disease through genes from their parents. It is autosomal dominant which is a pattern of genetic transmission where a dominant gene located on an autosome (non-sex chromosome) is passed down from an affected parent to their children. If a parent has FALS, there is a 50% chance that each child will inherit the gene carrying the disease.

The prognosis and life expectancy for SALS and FALS is the same. FALS may sometimes appear at a younger age than sporadic ALS, but not always. People in the same family may develop symptoms at very different ages. In some families, ALS runs in the family even though no known gene mutation is found. These are called 'gene-negative' familial ALS cases.

What are the 7 stages of ALS?

The King grading system is used to monitor disease progression.

There are five grades (7 stages in total) of ALS, which include the following:

• Stage 1: Symptom onset with involvement of the first region.
  • Early, often subtle symptoms appear, such as muscle weakness, cramps, twitching, or stiffness, typically affecting a single body region (a hand or foot).
  • Since the symptoms are mild, they may be mistaken for other issues.
• Stage 2A: Diagnosis.
  • As ALS advances, the ongoing loss of motor neurons intensifies muscle weakness and wasting, gradually affecting more areas of the body. Routine tasks such as walking, talking, swallowing, and even breathing become progressively more difficult.
  • Most patients are diagnosed in this stage, often by their healthcare provider and not a neurologist.
• Stage 2B: Involvement of the second region.
  • A second area of the body becomes weak.
• Stage 3: Involvement of the third region.
  • A third area of the body becomes weak.
• Stage 4A: Need for gastrostomy.
  • The ability to chew and swallow food is lost, and feeding must occur through a tube placed into the stomach.
• Stage 4B: Need for noninvasive ventilation.
  • The ability to breathe spontaneously is lost because breathing muscles have become too weak.
• Stage 5: Death.

These stages are useful for to provide for patients, family, caregivers, and healthcare providers. They provide guidance for the following:

• Set expectations for disease progression.
• Plan for care needs and assistive interventions ahead of time.
• Offer timely psychosocial and palliative support.

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Can ALS be cured?

There is no cure available for ALS presently. The disease has a progressive and fatal course. Once the disease process begins, there is a continuous decline in the ability to talk, write, pick up or hold things, swallow, and ultimately breathe. Research is being actively done the world over to develop more treatment options and a definite cure for ALS.

These medications are approved by the U.S. Food and Drug Administration for the treatment of ALS:

• Riluzole: Slows disease progression and modestly extends survival.
• Radicava (Edaravone): May slow the decline in physical function and extend survival.
• Nuedexta (dextromethorphan HBr and quinidine sulfate): Approved for pseudobulbar affect (episodes of involuntary laughing or crying), which can occur in patients with ALS. It does not affect symptom progression or extend life expectancy.
• Tofersen (Qalsody): This medication is indicated only for patients with for ALS linked to superoxide dismutase 1 (SOD1) gene mutations. It is injected into the spinal fluid by lumbar puncture and may slow the progressive of symptoms.

These medications do not cure ALS but may help increase life expectancy and improve quality of life. Access to multidisciplinary ALS clinics, with coordinated specialist care, does improve ALS prognosis and extend lifespan.

Participating in support groups for ALS can also help in improving the quality of life for ALS patients.

Can ALS be prevented?

There is no definitive prevention method for amyotrophic lateral sclerosis (ALS).

Frequently asked questions (FAQs) about ALS life expectancy

Is ALS 100% fatal?

Yes, ALS is considered 100% fatal. All individuals diagnosed with the disease eventually succumb to it, although the progression and survival time may vary significantly. The average life expectancy with ALS after diagnosis is two to five years.

What are the odds of beating ALS?

There is currently no cure for ALS, so "beating" the disease in the sense of full recovery is not possible.

How close are we to a cure for ALS?

There is currently no cure for ALS, but recent advances offer growing hope. New treatments like Tofersen (Qalsody) for SOD1-related ALS offer hope for future breakthroughs. Treatments including motor neuron–targeting genetic tools, experimental therapies such as CRISPR gene editing, and protein-based treatments are moving toward human clinical trials. The timeline should be measured in decades.

How can you live longer with ALS?

ALS is incurable. Being involved with a multidisciplinary ALS care team offers better access to treatment options and may improve quality of life and extend life expectancy.

How long did Stephen Hawking live with ALS?

Stephen Hawking was diagnosed with ALS in 1963 at 21 years of age and lived with the disease for about 55 years, dying at the age of 76.

Can you have ALS for years and not know it?

Yes. ALS can progress slowly in its early stages, and early symptoms such as muscle weakness, twitching, slurred speech, or cramps may be subtle and attributed to aging, injury, or other disorders. Because there is no single definitive test, diagnosis often occurs months after symptom onset, usually in King stage 2 of the disease.

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Medically Reviewed on 9/2/2025 References Brotman RG, Moreno-Escobar MC, et al. Amyotrophic Lateral Sclerosis. https://www.ncbi.nlm.nih.gov/books/NBK556151/ Updated 12Feb2024. Accessed: 29Aug2024 ALS Association. Remembering Stephen Hawking. https://www.als.org/blog/remembering-stephen-hawking-who-inspired-als-community-and-world. Updated: 14Mar2018. Accessed: 29Aug2025 Brown RH, Al-Chalabi A. Amyotrophic Lateral Sclerosis. N Engl J Med. 2017 Jul 13;377(2):162-172. Tzeplaeff L, Wilfling S, et al. Current State and Future Directions in the Therapy of ALS. Cells. 2023 May 31;12(11):1523.

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