Muscular dystrophy

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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 muscular dystrophy?

Muscular dystrophy (MD) refers to a group of more than 30 inherited diseases that cause muscle weakness and muscle loss. Some forms of MD appear in infancy or childhood, while others may not appear until middle age or later.

Common symptoms reported by people with muscular dystrophy

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.
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Treatments taken by people with muscular dystrophy

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

(Adderall)
Type
Prescription Drug
How many have tried
1
Tried for
Anxious mood (1) Fatigue (1)
Treatment name(s)
Type
Exercise
How many have tried
1
Tried for
Depressed mood (1)
Treatment name(s)

(Jacuzzi)
Type
Equipment
How many have tried
1
Tried for
Fatigue (1)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
1
Tried for
Pain (1)
Treatment name(s)

(Oxycontin)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
Treatment name(s)

(Opana ER)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
Treatment name(s)

(Seroquel)
Type
Prescription Drug
How many have tried
1
Tried for
Insomnia (1)
Treatment name(s)

(Belsomra)
Type
Prescription Drug
How many have tried
1
Tried for
Insomnia (1)
Treatment name(s)

(Restoril)
Type
Prescription Drug
How many have tried
1
Tried for
Insomnia (1)

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

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

(Adderall)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Anxious mood (1) Fatigue (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
Bursitis in right hip Tiredness increased
Total evaluations
1
Tried for
Depressed mood (1)
Treatment name(s)

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

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Numbness and tingling
Total evaluations
1
Tried for
Pain (1)
Treatment name(s)

(Oxycontin)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Constipation
Total evaluations
1
Tried for
Pain (1)
Treatment name(s)

(Opana ER)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Vertigo
Total evaluations
1
Tried for
Pain (1)
Treatment name(s)

(Seroquel)
Perceived effectiveness
for Insomnia (3 evaluations)
Side effects
Balance problems
Total evaluations
3
Tried for
Insomnia (1)
Treatment name(s)

(Belsomra)
Perceived effectiveness
for Insomnia (1 evaluation)
Side effects
Groggy in morning
Total evaluations
1
Tried for
Insomnia (1)
Treatment name(s)

(Restoril)
Perceived effectiveness
for Insomnia (1 evaluation)
Side effects
Total evaluations
2
Tried for
Insomnia (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 4
20s 9
30s 9
40s 7
50s 12
60s 2
70+ 3
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 12
20-29 years 3
30-39 years 3
40-49 years 0
50-59 years 2
60-69 years 0
70+ years 1

Sex

Distribution of sex

76% Female
24% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 26
Not Diagnosed 3

These charts show data from muscular dystrophy patients who have completed their condition history
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