how long can someone live with als
People with ALS most often live around 2–5 years after symptoms begin, but there is wide variation and some people live 10, 20, or more years.
How Long Can Someone Live With ALS?
Typical life expectancy
- Many large studies report an average (or median) survival of about 2–5 years from symptom onset.
- Roughly half of people with ALS live at least 3 years after diagnosis.
- A meaningful minority live much longer: about 20–25% reach 5+ years, 10% reach 10+ years, and around 5% may live 20 years or more.
- Famous example: physicist Stephen Hawking lived more than 50 years after his ALS diagnosis, showing how exceptional the outliers can be.
In forum discussions, families often describe loved ones who decline rapidly over 1–3 years, alongside others who stabilize and live for many years, which reinforces how unpredictable ALS can feel from the inside.
What factors affect how long someone can live?
Several medical and personal factors strongly influence survival.
- Age at onset
- Younger onset (for example, before 40–50) is often linked to longer survival, sometimes 10+ years on average.
* Onset after 70–80 is associated with shorter median survival, often under about 2 years.
- Site and speed of onset
- Limb-onset (starting in arms or legs) usually has a slightly better outlook than bulbar-onset (speech and swallowing first), though there are many exceptions.
* Slower progression at the beginning is generally a good sign; very fast early decline tends to predict shorter survival.
- Respiratory function and support
- Decline in breathing muscles is the main life‑limiting factor in ALS.
* Using non‑invasive ventilation (like BiPAP) and, in some cases, tracheostomy with a ventilator can extend life, sometimes by months to years, depending on the individual and how early they are started.
- Feeding and nutrition
- Weight loss and malnutrition worsen prognosis; feeding tubes can help maintain nutrition and may modestly prolong survival in some people.
- Access to multidisciplinary care and medications
- Being followed in an ALS specialty clinic, with coordinated neurology, respiratory, nutrition, and rehab support, is linked to better quality of life and modestly better survival.
* Drugs like riluzole, edaravone, and newer disease‑modifying therapies provide relatively small average gains in survival, but for some individuals they may be meaningful.
A quick overview table
Here is a simplified, big‑picture view (not a prediction for any one person):
| Situation | Typical pattern (very approximate) |
|---|---|
| Overall average person with ALS | About 2–5 years from symptom onset. | [3][5][7][9][1]
| Younger onset (<40–50) | Often 10+ years; some exceed 20 years. | [8][5]
| Older onset (>75–80) | Median survival under 2 years. | [5]
| Population as a whole | ~20–25% live ≥5 years, ~10% ≥10 years, ~5% ≥20 years. | [8][9][5]
| Exceptional outliers | Rare cases with 40–50+ years of survival (e.g., Stephen Hawking). | [9][1]
What people talk about in forums
Online ALS communities and caregiver forums often focus less on the number of years and more on what those years feel like.
- Caregivers in late‑stage situations describe loved ones on ventilators and feeding tubes, sometimes medically stable but feeling “trapped,” and they wrestle with whether prolonging life is the same as prolonging suffering.
- Many posts emphasize advance directives, DNR (do‑not‑resuscitate) choices, and hospice as key tools to align medical care with what the person with ALS actually wants.
- Others share stories of slower‑progressing ALS, where people adapt technology, wheelchairs, and communication devices to build meaningful lives over a decade or more.
A recurring theme in these discussions is that the quality of the time—connection, comfort, autonomy—matters as much as, or more than, the raw length of survival.
If this question is personal
If you are asking because you or someone you care about has ALS:
- A neurologist who regularly treats ALS is the only one who can give person‑specific guidance, based on breathing tests, progression speed, age, and overall health.
- Palliative care or hospice teams can join early, focusing on comfort, communication, emotional support, and planning, not just end‑of‑life.
- It can help to talk openly (when the person is ready) about what they value most: staying at home, avoiding certain interventions, or using every available treatment. These preferences can shape both how long and how well they live.
TL;DR: Most people with ALS live about 2–5 years from when symptoms start, but a significant minority live many years longer, and a small group live decades.
Information gathered from public forums or data available on the internet and portrayed here.
