ALS Life Expectancy: Outlook Explained
ALS is a type of motor neuron disease that damages the nervous system. It is a progressive condition, meaning that it worsens with time. As there is currently no cure for ALS, it is considered fatal.
The Centers for Disease Control and Prevention (CDC) suggests that most people with ALS live for 3–5 years after the onset of symptoms.
Similarly, a 2022 review suggests that the life expectancy after diagnosis is:
- 5 years for around 30% of people with ALS
- 10 years for 10–20% of people with ALS
However, outlooks can vary depending on the specific condition.
ALS life expectancy is personal and can vary widely
Life expectancy with ALS can vary widely.
Some people may only live for a few months after the onset of symptoms. In rarer cases, a person may live for decades. The famous theoretical physicist Stephen Hawking lived with ALS for 55 years.
It is important to remember that ALS life expectancies recorded in research are based on individual cases. Because of this, they are estimations and may not always apply to your specific condition.
Contact your doctor for personalized advice about your treatment and outlook.
Life expectancy for a person with ALS can depend on their age.
According to the CDC, a person with ALS may live longer if their symptoms appear earlier in life.
A 2021 study compared life expectancy for people with ALS to the age they first experienced symptoms. It found that participants who were younger than 65 at symptom onset had a median survival time of 40.2 months. Participants older than 65 had a median survival time of 25.9 months.
Additionally, being over the age of 75 at diagnosis is associated with a lower survival rate.
As ALS progresses, symptoms can begin to affect your daily life.
More advanced ALS may cause:
- spasticity, or tight or stiff muscles
- pain due to spasms
- muscle atrophy and weakness
- difficulty moving
- difficulty breathing, chewing, and swallowing
- reduced muscle tone
- difficulty with standing, walking, or coordination
As ALS can develop differently for each person, the symptoms you experience may vary.
Read more about the progression of ALS.
Some factors may indicate a decreased life expectancy with ALS, such as:
- a shorter interval between the onset of symptoms and diagnosis
- cognitive or functional impairment
Access to care and quality of care may also affect the outlook for a person with ALS.
Factors associated with an improved outlook include:
- younger age at the onset of symptoms
- longer interval between diagnosis and requiring riluzole medication
- treatment with noninvasive ventilation (NIV)
Below are some additional factors that may affect your outlook.
Low body weight
A 2018 study suggests that having a low body weight at diagnosis may be associated with a decreased survival rate.
Conversely, people with ALS who have a higher body weight or mild obesity may have an improved survival rate.
Also, losing a substantial amount of weight in early stage ALS may lead to a faster rate of disease progression. Research suggests this may be true even before diagnosis.
Symptoms and ALS type
The symptoms you experience and the effects ALS has on your body may affect your outlook.
For example, according to a 2017 systematic review, bulbar ALS has the shortest survival rate. People with this type of ALS have an estimated survival of fewer than 2 years from diagnosis.
Bulbar onset ALS refers to ALS that first affects the nerves and muscles involved in breathing, speaking, and swallowing. However, everyone with ALS will eventually develop some symptoms related to bulbar ALS.
Learn more about ALS symptoms, types, and diagnosis.
Complications of ALS may reduce your life expectancy. These can include:
- irregular heart rhythm due to medication
- difficulty chewing or swallowing, which can cause choking or aspiration pneumonia
- difficulty breathing and respiratory failure
There is currently no cure for ALS. However, some treatments can help slow the progression of the disease, alleviate symptoms, and improve quality of life.
Other treatments may also help reduce the risk of complications, which may increase your life expectancy.
Treatments for ALS can include:
- medications, such as:
- atropine (AtroPen, Atreza, Sal-Tropine)
- dextromethorphan and quinidine (Nuedexta)
- edaravone (Radicava)
- mexiletine (Mexitil, Namuscla)
- riluzole (Rilutek, Tiglutik, Exservan)
- sodium phenylbutyrate and taurursodiol (Relyvrio)
- pain relief and anti-inflammatory medication
- percutaneous gastrostomy or gastrostomy tubes to support nutrition
- botulinum toxin (Botox) injections
Further treatment may be necessary if you experience complications. For example, doctors may provide invasive ventilation if you experience respiratory problems.
The following methods can help alleviate symptoms and manage complications:
- physical therapy and exercise
- speech therapy
- nutritional support
- breathing support, such as wearing an oxygen mask or breathing tube
- specialized ergonomic and assistive devices, such as canes or pressure-relieving mattresses
- computer-assistive devices, such as speech synthesizers or automated wheelchairs
Susan W. Lee, D.O., has reviewed the following frequently asked questions.
Is ALS always fatal?
Yes, ALS is always fatal.
However, 10-20% of people with ALS may live up to 10 years or longer.
How quickly does ALS progress?
How quickly ALS progresses can depend on many factors, such as your age, early symptoms, and treatment.
For some people, the condition can progress to become fatal within 2 years of diagnosis. For others, the condition may progress more slowly. In some cases, a person may live for 10 years or more after diagnosis.
Life expectancy with ALS can vary widely and depend on several factors. These can include your age at diagnosis, weight, and symptoms.
Average life expectancy for someone with ALS is 3–5 years from diagnosis. However, around 10–20% of people with the condition may live for more than 10 years.
ALS is currently not curable. However, treatments and management options can help alleviate your symptoms and improve your quality of life. They may also improve your outlook by reducing your risk of complications.
Contact your doctor for personalized advice about your outlook and treatment.