What do we know about Castleman disease?

  • Castleman disease causes the immune system to become hyper-activated.
  • The immune cells rapidly proliferate in the lymph node and release inflammatory signals called cytokines.
  • Cytokines cause flu-like symptoms and damage organs in the body, such as the liver, kidneys, and bone marrow, which may even lead to organ failure.

What do we need to know about Castleman disease?

  • What causes the immune system cells to become hyper-activated and release the inflammatory signals that damage the body?
  • What type of immune cells are involved in Castleman disease?
  • What are all of the cytokines (inflammatory signals) released?
  • What are treatments that can help?

Why is it important to help?

Castleman disease does not discriminate, it affects people of all ages, making them very sick with flu-like symptoms and enlarged lymph nodes. Castleman disease can also lead to organ failure and even death. Research will also allow us to find new ways to identify Castleman disease in patients leading to a faster diagnosis which will result in faster time to treatment. We need to know what causes the disease in order to find a cure.

In order to find new ways to diagnose the disease and find out what causes Castleman disease, researchers need to be able to study patients’ blood, saliva, and lymph nodes. Because there are so few patients with Castleman disease, it is difficult for researchers studying the disease to obtain the blood and tissue samples they need so they can conduct necessary research.  To find a cure we need patients to donate blood, saliva, and tissue samples for our research studies.

What can you do to help?

You can help make a difference for patients with Castleman disease by helping us find a cure for this deadly disease. Here’s what you can do now:

  1. Share your Castleman disease data: Be sure that you have taken 15-20 minutes to enroll in the ACCELERATE Castleman Disease patient research study, which is collecting data on patients from around the world to identify patterns and information to improve treatment and care.
    • This is a huge opportunity to do your part to help solve the mysteries of CD!
    • NOTE: Password when you sign up must be at least 8 characters long and include:
      • 1 number (0-9)
      • 1 lowercase letter (a-z)
      • 1 uppercase letter (A-Z)
      • 1 symbol character (any character not a number or letter)
      • Ex: Castleman1!!
  2. Share samples: Be sure that you have taken 5 minutes to express interest in contributing samples for ongoing and future research studies, click here
  3. Donate funds for CD research: Research is not possible without funding. You can donate or share the link with friends and family to enable life-saving CD research - https://www.cdcn.org/donate
  4. Join the Warriors: Patients can join the Castleman Warrior team and create their own Warrior fundraising pages to share with family and friends.
  5. Connect: Make sure you have joined the CDCN Patient/Loved One Community, click here to join and gain access to all available information, resources, and peet support groups. 
  6. Let us know how we can help! Email info@castlemannetwork.org or call (610)304-0696 if you would like more information or have any questions.

Thank you for your help in finding a cure!