Pompe disease
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 Pompe disease?
Pompe disease, also known as glycogen storage disease type II, is a condition characterized predominantly by general muscle weakness. It may occur in infants or children and adults. In the infant form, the heart is significantly affect; in the adult form, the limbs and diaphragm are affected.
Common symptoms reported by people with Pompe disease
Common symptoms
How bad it is
What people are taking for it
Common symptom
Shortness of breath with exertion
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Weakness in shoulders
How bad it is
What people are taking for it
Nothing reported yet
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 for Pompe disease
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Compare treatments taken by people with Pompe disease
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Who has Pompe disease on PatientsLikeMe?
- 0 new patients joined this month
- 63 say Pompe disease is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 1 | |
| 30s | 3 | |
| 40s | 6 | |
| 50s | 7 | |
| 60s | 4 | |
| 70+ | 15 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 2 | |
| 20-29 years | 1 | |
| 30-39 years | 1 | |
| 40-49 years | 1 | |
| 50-59 years | 3 | |
| 60-69 years | 1 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 16 | |
| Female | 46 |
| Condition Types | Proportion | # of patients |
|---|---|---|
| Adult onset | 45 | |
| Infantile onset | 2 | |
| Juvenile onset | 3 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 25 | |
| Not Diagnosed | 1 |
These charts show data from Pompe disease patients who have completed their condition history
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