Mitochondrial disease

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 mitochondrial disease?

Mitochondrial diseases result from failures of mitochondrial, compartments present in every cell except red blood cells and responsible for creating the energy needed to sustain life and support growth. Symptoms and treatment vary depending on which cells are affected. There are over 40 types.

Common symptoms reported by people with mitochondrial disease

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 mitochondrial disease

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

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
4
Tried for
mitochondrial disease (4) fatigue (1)
Treatment name(s)

(R-lipoic Acid)
Type
Supplement
How many have tried
2
Tried for
mitochondrial disease (2)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Carnitor)
Type
Supplement
How many have tried
2
Tried for
fatigue (1) mitochondrial disease (1)
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Supplement
How many have tried
1
Tried for
fatigue (1) mitochondrial disease (1)
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(Wellbutrin XL)
Type
Prescription Drug
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(BuSpar)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Cannabidiol oil)
Type
Other
How many have tried
1
Tried for
pain (1)

Data from patients with mitochondrial disease, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with mitochondrial disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
for mitochondrial disease (1 evaluation)
Side effects
Total evaluations
1
Tried for
mitochondrial disease (4) fatigue (1)
Treatment name(s)

(R-lipoic Acid)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
mitochondrial disease (2)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
weight gain
Total evaluations
1
Tried for
pain (2)
Treatment name(s)

(Carnitor)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1) mitochondrial disease (1)
Treatment name(s)

(Tylenol)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1) mitochondrial disease (1)
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (1 evaluation)
Side effects
Total evaluations
1
Tried for
fatigue (1)
Treatment name(s)

(Wellbutrin XL)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1)
Treatment name(s)

(BuSpar)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (1)
Treatment name(s)

(Cannabidiol oil)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with mitochondrial disease, who reported starting treatments within the last 5 years.
Last updated:

Who has mitochondrial disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 11
20s 15
30s 33
40s 28
50s 19
60s 12
70+ 5
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 53
20-29 years 10
30-39 years 12
40-49 years 5
50-59 years 3
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 25
Female 100

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 77
Not Diagnosed 19

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