Pompe 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 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

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.
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Treatments taken by people with Pompe disease

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

(Lumizyme)
Type
Prescription Drug
How many have tried
7
Tried for
Pompe disease (7)
Treatment name(s)

(Marinol)
Type
Prescription Drug
How many have tried
1
Tried for
muscle pain (1) pain (1)
Type
Procedures
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
1
Tried for
muscle pain (1) pain (1)
Treatment name(s)

(Mobic)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Oxycodone IR)
Type
Prescription Drug
How many have tried
1
Tried for
muscle pain (1) pain (1)
Treatment name(s)

(Percocet)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Type
Other
How many have tried
1
Tried for
Pompe disease (1)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)

Data from patients with Pompe disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with Pompe disease

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

(Lumizyme)
Perceived effectiveness
for Pompe disease (8 evaluations)
Side effects
headaches itching 1 more
Total evaluations
8
Tried for
Pompe disease (7)
Treatment name(s)

(Marinol)
Perceived effectiveness
for muscle pain (1 evaluation)
Side effects
dizziness tiredness
Total evaluations
1
Tried for
muscle pain (1) pain (1)
Perceived effectiveness
for pain (1 evaluation)
Side effects
overstimulation
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for muscle pain (1 evaluation)
Side effects
tiredness
Total evaluations
1
Tried for
muscle pain (1) pain (1)
Treatment name(s)

(Mobic)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Oxycodone IR)
Perceived effectiveness
for muscle pain (1 evaluation)
Side effects
tiredness
Total evaluations
1
Tried for
muscle pain (1) pain (1)
Treatment name(s)

(Percocet)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Perceived effectiveness
for Pompe disease (1 evaluation)
Side effects
Total evaluations
1
Tried for
Pompe disease (1)
Treatment name(s)

(Ultram)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Pompe disease, who reported starting treatments within the last 5 years.
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Who has Pompe disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 1
30s 13
40s 13
50s 18
60s 5
70+ 4
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 7
20-29 years 4
30-39 years 7
40-49 years 3
50-59 years 2
60-69 years 1
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 13
Female 43

Types
Condition Types Proportion # of patients
Adult onset 44
Infantile onset 1
Juvenile onset 2
Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 27
Not Diagnosed 1

These charts show data from Pompe disease patients who have completed their condition history
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