ALS (Amyotrophic Lateral Sclerosis)

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is ALS (Amyotrophic Lateral Sclerosis)?

ALS (amyotrophic lateral sclerosis) is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

What is it like to have ALS (Amyotrophic Lateral Sclerosis)?

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, insomnia, fatigue, and pain) regardless of condition.
Last updated:

What do patients take to treat ALS (Amyotrophic Lateral Sclerosis) and its symptoms?

Treatments reported by members
Perceived effectiveness
Overall rating of side effects
# of Evaluations

These charts show data from ALS patients’ latest treatment evaluations
Last updated:

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has ALS (Amyotrophic Lateral Sclerosis) on PatientsLikeMe?


Age
Age Proportion # of patients
<20 9
20s 102
30s 288
40s 865
50s 1,540
60s 1,589
70+ 911

Gender

Distribution of females vs. males

42% Females
58% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 35
20-29 years 186
30-39 years 567
40-49 years 1,072
50-59 years 1,271
60-69 years 786
70+ years 182

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4,444
Not Diagnosed 217

These charts show data from ALS patients who have completed their condition history
Last updated: