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

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.
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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?

  • 0 new patients joined this month
  • 48 say hereditary hemorrhagic telangiectasia is their primary condition

Age
Age Proportion # of patients
<20 0
20s 0
30s 5
40s 7
50s 15
60s 23
70+ 13
Age at first symptom
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
Sex Proportion # of patients
Male 18
Female 48

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 26
Not Diagnosed 3

These charts show data from hereditary hemorrhagic telangiectasia patients who have completed their condition history
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