Pure Autonomic Failure

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 Pure Autonomic Failure?

Pure autonomic failure affects the autonomic nervous system which controls involuntary actions, including breathing, blood pressure, and heart rate. This usually presents in the middle to late life and prognosis is usually benign if the symptoms are treated.

What is it like to have Pure Autonomic Failure?

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 Pure Autonomic Failure and its symptoms?

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Lyrica, Maxgalin, Provelyn)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)

Data from patients with Pure Autonomic Failure, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments for Pure Autonomic Failure

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Treatment name(s)

(Lyrica, Maxgalin, Provelyn)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
How many evaluations
1
Tried for
Pain (1)

Data from patients with Pure Autonomic Failure, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

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

Who has Pure Autonomic Failure on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 5
30s 1
40s 4
50s 2
60s 4
70+ 0

Gender

Distribution of females vs. males

53% Females
47% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 3
20-29 years 1
30-39 years 0
40-49 years 2
50-59 years 1
60-69 years 1
70+ years 0

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 10
Not Diagnosed 3

These charts show data from Pure Autonomic Failure patients who have completed their condition history
Last updated: