What is hereditary hemorrhagic telangiectasia?
Hereditary hemorrhagic telangiectasia, a rare genetic disorder, is characterized by abnormal blood vessel formations that may cause abnormalities in the lungs, brain, spine, and liver. The main symptom is bleeding. Treatment and evaluation may improve quality of life and prevent other complications.
How do members experience hereditary hemorrhagic telangiectasia?
Top 5 symptoms reported by people with hereditary hemorrhagic telangiectasia*
Common symptoms
How bad it is
What people are taking for it
Common symptom
Pain
How bad it is
What people are taking for it
Common symptom
Fatigue
How bad it is
What people are taking for it
Common symptom
Stress
How bad it is
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Nothing reported yet
Common symptom
Gastrointestinal bleeding
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Nosebleeds (epistaxis)
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 hereditary hemorrhagic telangiectasia*
Who has hereditary hemorrhagic telangiectasia on PatientsLikeMe?
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 0 | |
| 30s | 3 | |
| 40s | 9 | |
| 50s | 16 | |
| 60s | 18 | |
| 70+ | 19 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 18 | |
| Female | 47 |