Finding

support

Being diagnosed and living with a serious, rare disease can be very difficult - you may feel scared, confused, upset and alone. Your doctor, your friends and family, and other patients can all provide valuable support.

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Your Doctor...

Learn as much as you can about Castleman disease from your doctor and discuss any concerns that you may have. So that you can take part in managing your disease, ask them about different treatment options and the benefits and risks associated with them. You could also ask where you can get more information on the disease or how to meet with other people who have the disease.

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Other patients with Castleman disease...

Discussing and sharing your experiences with people who have the same disease can be very helpful. Castleman disease patient groups and organisations are a great way to find and talk to other patients. Patient organisations are not-for-profit organisations which focus on the patient. As well as forming a patient community, patient organisations are also a great resource to find out more about the disease.

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Friends and family...

Tell your friends and family about your disease. Explain your symptoms and treatments, and how they impact your daily life so that they understand what you are going through. They may also feel shocked and worried, so ask them if they have any questions. Finally, tell them how they can best help and support you.

Useful

patient   organisations

include:

Castleman Disease Collaborative Network: A global network dedicated to accelerating research and treatment for Castleman disease, as well supporting patients and their family and friends, https://cdcn.org/

RareConnect Castleman Disease Community: an online community of patients with Castleman disease https://www.rareconnect.org/en/community/castleman-disease/updates

Eurodis: a group of 924 rare disease patient organisations, https://www.eurordis.org/about-eurordis

Carenity: a platform that harnesses new technology to help people feel less alone with their condition and connects people suffering from the same conditions, https://www.carenity.co.uk/condition-information/castleman-disease-1477

Castleman Disease Support Group: a Facebook group for patients and loved ones who are living with Castleman disease, https://www.facebook.com/groups/403839776489587/

International Castlemans Disease Organization: a Facebook support group for patients, families, and care givers of Castleman disease patients, https://www.facebook.com/groups/48343887930/

Other

patient   associations

around the world

Europe
CASTLEMANS DISEASE SUPPORT GROUP EUROPA, https://www.facebook.com/groups/169023060317665

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ITALY
Associazione Malati Italiani Castleman (AMICa), https://www.amicaodv.it/
Associazione Malati Italiani Castleman (AMICa) – Facebook, https://www.facebook.com/amicaodvcastleman

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UNITED KINGDOM
CASTLEMAN DISEASE SUPPORT GROUP, https://www.facebook.com/groups/425740177761651

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UNITED STATES
CDCN, https://cdcn.org/
NORD, https://rarediseases.org/
GLOBAL GENES, https://globalgenes.org/
RARE CONNECT, https://www.rareconnect.org/en
CASTLEMAN DISEASE SUPPORT GROUP – FACEBOOK, https://www.facebook.com/groups/403839776489587/
INTERNATIONAL CASTLEMANS DISEASE ORGANIZATION – FACEBOOK, https://www.facebook.com/groups/48343887930/

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Resources for patients

with Castleman disease

iMCD information

This booklet provides information and guidance for people diagnosed with iMCD.

DOWNLOAD

Symptom tracker & patient diary

It is important to keep track of changes in the symptoms of iMCD, or any new ones that may appear. This diary can help people living with Castleman disease to make a note of any changes they may experience in their condition.

LEARN MORE

Useful

terms

BIOPSY

A biopsy is when a small amount of tissue is taken from the body and examined, usually under a microscope.

IDIOPATHIC

When the cause of a disease is not known, it is said to be idiopathic. For example, idiopathic multicentric Castleman disease, is when an individual has Multicentric Castleman disease, but the cause is not known.

IMMUNE SYSTEM

Your immune system protects the body from infections, for example bacterial and viral infections. The immune system is made up of lots of different organs (such as the spleen and lymph nodes) and cells (such as white blood cells).

HUMAN HERPESVIRUS 8

Human herpesvirus 8 is a virus that can occasionally cause Multicentric Castleman disease.

LIVER

The liver is an organ in the body that has many functions including the removal of toxic substances from the blood. In multicentric Castleman disease the liver is sometimes larger than normal.

LYMPH NODE

Lymph nodes are part of your immune system. They contain specific types of cells which help your body fight off infections. Lymph nodes are found in groups throughout your body.

MULTICENTRIC CASTLEMAN DISEASE

Multicentric Castleman disease is where two or more groups of lymph nodes contain lymph nodes that are larger than normal and have microscopic changes. The disease can be life-threatening.

SPLEEN

The spleen is an organ found in the body that filters the blood and is part of the immune system. It produces white blood cells which protect the body from infections. In multicentric Castleman disease the spleen is sometimes larger than normal.

UNICENTRIC CASTLEMAN DISEASE

Unicentric Castleman disease is where one group of lymph nodes contain one or more lymph nodes that are larger than normal and have microscopic changes. The disease can usually be cured by removing the affected lymph nodes in an operation.

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