Castleman's disease

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 Castleman's disease?

Castleman disease is rare disorder classified as a lymphoproliferative disorder characterized by non-cancerous growths (tumors) that may develop in the lymph node tissue at a single site (unicentric) or throughout the body (multicentric).

Common symptoms reported by people with Castleman's disease

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 Castleman's disease

No data

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

Got a question about living with Castleman's disease? Members in the forum might have the answers.

Compare treatments taken by people with Castleman's disease

No data

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

Got a question about living with Castleman's disease? Members in the forum might have the answers.

Who has Castleman's disease on PatientsLikeMe?


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

Distribution of sex

Sex
Sex Proportion # of patients
Male 2
Female 7

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4
Not Diagnosed 1

These charts show data from Castleman's disease patients who have completed their condition history
Last updated: