Adrenomyeloneuropathy
We’re all in this for good.
- 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 adrenomyeloneuropathy?
Adrenomyeloneuropathy, a milder form of adrenoleukodystrophy (X-ALD), is a rare inherited disorder that begins in adolescence or adulthood. It is characterized by spinal cord dysfunction with progressive stiffness and weakness of the legs, abnormal sphincter muscle control, and sexual dysfunction.
Common symptoms reported by people with adrenomyeloneuropathy
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, fatigue, pain, and stress) regardless of condition.
Last updated:
Treatments taken by people with adrenomyeloneuropathy
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with adrenomyeloneuropathy, who reported starting treatments within the last 5 years.
Last updated:
Compare treatments taken by people with adrenomyeloneuropathy
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood
(1)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
suicidal thoughts or urges
Total evaluations
1
Tried for
anxious mood
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with adrenomyeloneuropathy, who reported starting treatments within the last 5 years.
Last updated:
Who has adrenomyeloneuropathy on PatientsLikeMe?
- 26 patients have this condition
- 0 new patients joined this month
- 22 say adrenomyeloneuropathy is their primary condition
Age | Proportion | # of patients |
---|---|---|
<20 | 1 | |
20s | 0 | |
30s | 5 | |
40s | 12 | |
50s | 6 | |
60s | 0 | |
70+ | 1 |
Age at first symptom | Proportion | # of patients |
---|---|---|
0-19 years | 1 | |
20-29 years | 2 | |
30-39 years | 3 | |
40-49 years | 0 | |
50-59 years | 0 | |
60-69 years | 0 | |
70+ years | 0 |
Distribution of sex
Sex | Proportion | # of patients |
---|---|---|
Male | 20 | |
Female | 5 |
Diagnosis status | Proportion | # of patients |
---|---|---|
Diagnosed | 9 | |
Not Diagnosed | 0 |
These charts show data from adrenomyeloneuropathy patients who have completed their condition history
Last updated: