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.
How do members experience tuberous sclerosis?
Top 5 symptoms reported by people with tuberous sclerosis*
Common symptoms
How bad it is
What people are taking for it
Common symptom
Shortness of breath (dyspnea)
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Stress
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Pain
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.
Top treatments taken by people for tuberous sclerosis*
Who has tuberous sclerosis on PatientsLikeMe?
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 9 | |
| 20s | 7 | |
| 30s | 15 | |
| 40s | 9 | |
| 50s | 11 | |
| 60s | 1 | |
| 70+ | 2 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 17 | |
| Female | 37 |