Tuberous sclerosis

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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 tuberous sclerosis?

Tuberous sclerosis is a group of two genetic disorders that affect the skin, brain/nervous system, kidneys, and heart, and cause tumors to grow. Treatment is aimed at the early identification of potentially progressive lesions, minimization of complications, and relief of symptoms.

Common symptoms reported by people with tuberous sclerosis

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 tuberous sclerosis

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

(Cymbalta)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)

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

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

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

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


Age
Age Proportion # of patients
<20 10
20s 7
30s 12
40s 8
50s 4
60s 1
70+ 1
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 0
30-39 years 1
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 14
Female 29

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 25
Not Diagnosed 2

These charts show data from tuberous sclerosis patients who have completed their condition history
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