What is Von Hippel-Lindau?
Von Hippel-Lindau syndrome is an inherited disorder characterized by the formation of tumors and fluid-filled sacs (cysts) in different parts of the body. Tumors usually appear during young adulthood; however, the signs and symptoms can occur throughout life.
How do members experience Von Hippel-Lindau?
Top 5 symptoms reported by people with Von Hippel-Lindau*
Common symptoms
How bad it is
What people are taking for it
Common symptom
Fatigue
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
Nothing reported yet
Common symptom
Anxious mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Depressed mood
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.
Top treatments taken by people for Von Hippel-Lindau*
Who has Von Hippel-Lindau on PatientsLikeMe?
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 1 | |
| 30s | 4 | |
| 40s | 6 | |
| 50s | 2 | |
| 60s | 3 | |
| 70+ | 1 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 8 | |
| Female | 9 |