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
Common symptom
Gastrointestinal bleeding
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.
Last updated:
Treatments taken by people with hereditary hemorrhagic telangiectasia
Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Laser Coagulation Therapy
Type
Procedures
How many have tried
1
Tried for
hereditary hemorrhagic telangiectasia
(1)
Treatment name(s)
Lavender Essential Oil
Type
Complementary and Alternative Medicine
How many have tried
1
Tried for
nosebleeds (epistaxis)
(1)
Treatment name(s)
Ponaris
Type
Complementary and Alternative Medicine
How many have tried
1
Tried for
nosebleeds (epistaxis)
(1)
Data from patients with hereditary hemorrhagic telangiectasia, who reported starting treatments within the last 5 years.
Last updated:
Compare treatments taken by people with hereditary hemorrhagic telangiectasia
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
hereditary hemorrhagic telangiectasia
(1)
Treatment name(s)
Laser Coagulation Therapy
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
hereditary hemorrhagic telangiectasia
(1)
Treatment name(s)
Lavender Essential Oil
Perceived effectiveness
for nosebleeds (epistaxis) (1 evaluation)
Side effects
Total evaluations
1
Tried for
nosebleeds (epistaxis)
(1)
Treatment name(s)
Ponaris
Perceived effectiveness
for nosebleeds (epistaxis) (1 evaluation)
Side effects
odor
Total evaluations
1
Tried for
nosebleeds (epistaxis)
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
Treatment name(s)
Trigger Point Injections
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with hereditary hemorrhagic telangiectasia, who reported starting treatments within the last 5 years.
Last updated:
Who has hereditary hemorrhagic telangiectasia on PatientsLikeMe?
- 61 patients have this condition
- 1 new patients joined this month
- 41 say hereditary hemorrhagic telangiectasia is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 1 | |
| 30s | 7 | |
| 40s | 10 | |
| 50s | 15 | |
| 60s | 16 | |
| 70+ | 6 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 8 | |
| 20-29 years | 3 | |
| 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 | 17 | |
| Female | 40 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 25 | |
| Not Diagnosed | 3 |
These charts show data from hereditary hemorrhagic telangiectasia patients who have completed their condition history
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