Paraganglioma

We’re all in this for good.

By sharing your stories and data, you will:
  • 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 paraganglioma?

Paragangliomas are neuroendocrine tumors of the autonomic nervous system.

Common symptoms reported by people with paraganglioma

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.
Last updated:

Treatments taken by people with paraganglioma

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Lifestyle Modification
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(Minipress)
Type
Prescription Drug
How many have tried
1
Tried for
paraganglioma (1)

Data from patients with paraganglioma, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with paraganglioma

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

(Minipress)
Perceived effectiveness
for paraganglioma (1 evaluation)
Side effects
lightheadedness
Total evaluations
1
Tried for
paraganglioma (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with paraganglioma, who reported starting treatments within the last 5 years.
Last updated:

Who has paraganglioma on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 1
30s 3
40s 2
50s 4
60s 1
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 0
30-39 years 0
40-49 years 0
50-59 years 1
60-69 years 0
70+ years 0

Sex

Distribution of sex

100% Female
0% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 2
Not Diagnosed 0

These charts show data from paraganglioma patients who have completed their condition history
Last updated: