Hereditary hemorrhagic telangiectasia
We’re all in this for good.
- help each other live better and uncover the best ways to manage your health today
- help researchers shorten the path to new treatments tomorrow
How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.
What is hereditary hemorrhagic telangiectasia?
Hereditary hemorrhagic telangiectasia is a genetic disorder that leads to abnormal blood vessel formation in the skin and mucous membranes. Telangiectases can bleed easily and are usually seen on the tongue, lips, nasal mucosa, face, ears, fingertips, nails, whites of the eyes, and skin.
Common symptoms reported by people with hereditary hemorrhagic telangiectasia
Common symptoms
How bad it is
What people are taking for it
Common symptom
Nosebleeds (epistaxis)
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Gastrointestinal (GI) 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
hereditary hemorrhagic telangiectasia
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(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?
- 58 patients have this condition
- 0 new patients joined this month
- 38 say hereditary hemorrhagic telangiectasia is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 1 | |
| 30s | 6 | |
| 40s | 10 | |
| 50s | 12 | |
| 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 | 16 | |
| Female | 38 |
| 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
Last updated: