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
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
How bad it is
What people are taking for it
Methylphenidate Wheelchair (manual)
Common symptom
How bad it is
What people are taking for it
Bevacizumab Hemp seed oil Laser Coagulation Therapy
Common symptom
How bad it is
What people are taking for it
Tramadol Cervical Epidural Codeine-acetaminophen (paracetamol)
Common symptom
How bad it is
What people are taking for it
Escitalopram Hydroxyzine
Common symptom
How bad it is
What people are taking for it
Sertraline Escitalopram
Common symptom
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.
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Treatments taken by people with hereditary hemorrhagic telangiectasia

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Tylenol with Codeine #3)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Voltaren)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(FeraMAX)
Type
Supplement
How many have tried
1
Tried for
hereditary hemorrhagic telangiectasia (1)
Treatment name(s)
Type
Procedures
How many have tried
1
Tried for
hereditary hemorrhagic telangiectasia (1)
Treatment name(s)
Type
Complementary and Alternative Medicine
How many have tried
1
Tried for
nosebleeds (epistaxis) (1)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Procedures
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Invacare Manual Wheelchair)
Type
Equipment
How many have tried
1
Tried for
fatigue (1) pain (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
Treatment name(s)

(Tylenol with Codeine #3)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Voltaren)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(FeraMAX)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
hereditary hemorrhagic telangiectasia (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
hereditary hemorrhagic telangiectasia (1)
Treatment name(s)
Perceived effectiveness
for nosebleeds (epistaxis) (1 evaluation)
Side effects
Total evaluations
1
Tried for
nosebleeds (epistaxis) (1)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Invacare Manual Wheelchair)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1) 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.
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Who has hereditary hemorrhagic telangiectasia on PatientsLikeMe?

  • 0 new patients joined this month
  • 44 say hereditary hemorrhagic telangiectasia is their primary condition
Age
Age Proportion # of patients
<20 0
20s 1
30s 5
40s 12
50s 16
60s 17
70+ 7
Age at first symptom
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
Sex Proportion # of patients
Male 17
Female 44
Diagnosis status
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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