Hereditary hemorrhagic telangiectasia
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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.
Common symptoms reported by people with hereditary hemorrhagic telangiectasia
Treatments taken by people for hereditary hemorrhagic telangiectasia
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Compare treatments taken by people with hereditary hemorrhagic telangiectasia
Let’s build this page together! When you share what it’s like to have hereditary hemorrhagic telangiectasia through your profile, those stories and data appear here too.
Got a question about living with hereditary hemorrhagic telangiectasia? Members in the forum might have the answers.
Who has hereditary hemorrhagic telangiectasia on PatientsLikeMe?
- 1 new patients joined this month
- 49 say hereditary hemorrhagic telangiectasia is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 0 | |
| 30s | 4 | |
| 40s | 8 | |
| 50s | 15 | |
| 60s | 23 | |
| 70+ | 14 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 8 | |
| 20-29 years | 4 | |
| 30-39 years | 6 | |
| 40-49 years | 3 | |
| 50-59 years | 2 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 18 | |
| Female | 48 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 26 | |
| Not Diagnosed | 3 |