Angiomyolipomatosis

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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 Angiomyolipomatosis?

Angiomyolipomatosis are multiple non cancerous tumors of found on kidneys.

What is it like to have Angiomyolipomatosis?

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, insomnia, fatigue, and pain) regardless of condition.
Last updated:

What do patients take to treat Angiomyolipomatosis and its symptoms?

You’ve tried
Treatment name(s)
Type
How many have tried
How many evaluations
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
Type
Prescription Drug
How many have tried
1
How many evaluations
0
Treatment name(s)

(CPD Diclofenac 5% in Diffusimax gel, Cambia, Cataflam) 21 more
Type
Prescription Drug
How many have tried
1
How many evaluations
0
Treatment name(s)

(Endone, OxyIR, OxyNEO) 9 more
Type
Prescription Drug
How many have tried
1
How many evaluations
0

Data from patients with Angiomyolipomatosis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments for Angiomyolipomatosis

You’ve tried
Treatment name(s)
How many have tried
Perceived effectiveness
Side effects
How many evaluations
Treatment name(s)

(Amineurin, Amitriptyline Troche, Anapsique) 10 more
How many have tried
1
Perceived effectiveness
Side effects
How many evaluations
0
Treatment name(s)

(CPD Diclofenac 5% in Diffusimax gel, Cambia, Cataflam) 21 more
How many have tried
1
Perceived effectiveness
Side effects
How many evaluations
0
Treatment name(s)

(Endone, OxyIR, OxyNEO) 9 more
How many have tried
1
Perceived effectiveness
Side effects
How many evaluations
0

Data from patients with Angiomyolipomatosis, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Angiomyolipomatosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 1
30s 0
40s 0
50s 0
60s 0
70+ 0

Gender

Distribution of females vs. males

100% Females
0% Males
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 0
60-69 years 0
70+ years 0

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

These charts show data from Angiomyolipomatosis patients who have completed their condition history
Last updated:
No data

Let’s build this page together! When you share what it’s like to have Angiomyolipomatosis through your profile, those stories and data appear here too.

Got a question about living with Angiomyolipomatosis? Members in the forum might have the answers.