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*

*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

Age Proportion # of patients
<20 0
20s 0
30s 4
40s 7
50s 4
60s 2
70+ 2

Distribution of sex

Sex

Sex Proportion # of patients
Male 9
Female 9

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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.



Common symptoms reported by people with Von Hippel-Lindau

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.
Last updated:



Treatments taken by people for Von Hippel-Lindau

Let’s build this page together! When you share what it’s like to have Von Hippel-Lindau through your profile, those stories and data appear here too.

Got a question about living with Von Hippel-Lindau? Members in the forum might have the answers.


Compare treatments taken by people with Von Hippel-Lindau

Let’s build this page together! When you share what it’s like to have Von Hippel-Lindau through your profile, those stories and data appear here too.

Got a question about living with Von Hippel-Lindau? Members in the forum might have the answers.



Who has Von Hippel-Lindau on PatientsLikeMe?

  • 0 new patients joined this month
  • 19 say Von Hippel-Lindau is their primary condition

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

Distribution of sex

Sex
Sex Proportion # of patients
Male 9
Female 9

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6
Not Diagnosed 0

These charts show data from Von Hippel-Lindau patients who have completed their condition history
Last updated: