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.
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.
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.
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.
