Taking care of your loved one and yourself
For Caregivers
Caregivers for people with iMCD
Being a caregiver for a loved one who has idiopathic multicentric Castleman disease (iMCD) can be tough. Every day can bring a different challenge, and the best way to help your loved one is to educate yourself about iMCD so you can be prepared for the challenges ahead.
Use the resources available online to learn about Castleman disease, as well as treatments for
iMCD and their possible side effects. Check with your doctor’s office for any additional
resources.
A tool that helps track symptoms
It’s important for patients to track their symptoms and report them to their doctor so that they
can receive proper care.
The importance of self-care
As a caregiver, it’s crucial that you take care of yourself. Anxiety, irritability, and
depression are some of the many emotions that caregivers may experience. Focusing on your mental
health is also important so that you are prepared to help your loved one deal with the
challenges ahead.
Preparing for the ups and downs
Your loved one may become depressed, angry, or stressed out because of their situation. Short
walks, stretching exercises, and yoga are good options. Please consult your doctor before
beginning an exercise routine.
Make time for yourself
Taking care of your mental and emotional health is important. Ask a friend or family member
to look after your loved one so that you can do the things you are passionate
about.
Join online communities
There are communities that offer support for caregivers and patients with rare diseases. Connect with others to learn how they are dealing with the challenges they are facing.
Sign up for more on iMCD
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Your iMCD Diary
Save and use this Patient Diary online with your Google account by selecting “Google Sheet” and then “Use Template,” or download to your computer by selecting “Excel File.”
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Viral hemophagocytic lymphohistiocytosis.
A doctor who specializes in the branch of medicine that deals with rheumatic conditions.
Polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes.
Positron emission tomography (PET) is a method of producing a 3-dimensional image of the internal
structures of body tissues after administering a natural biochemical substance like glucose or fatty
acids. These images are generated with the help of a computer.
A doctor who evaluates the changes caused by disease in tissues and body fluids and helps reach a
diagnosis.
A doctor who specializes in the diagnosis and treatment of kidney abnormalities.
Macrophage activation syndrome.
Malignancy-associated hemophagocytic lymphohistiocytosis.
A disease in which cells of the lymph system grow excessively
Lymph nodes make immune cells that help the body fight infection.
A key signaling molecule that helps to regulate the body’s immune system.
Infectious disease medicine is the subspecialty of internal medicine that focuses on diagnosing and
managing infections.
A rare condition that affects multiple groups of lymph nodes throughout the body. Patients with iMCD
are HIV negative and HHV-8 negative.
The underlying cause or origin of a disease is unknown.
Hemophagocytic lymphohistiocytosis.
Human immunodeficiency virus.
Human herpesvirus-8.
A doctor who specializes in the branch of medical science that deals with cancers of the blood and
blood-forming tissues.
Powerful molecules that are normally secreted by the cells of the immune system in response to
infectious or noninfectious agents.
An overreaction of the body’s immune system in which too many cytokines are released into the
bloodstream very quickly, with potentially severe or life-threatening effects.
Computed tomography (CT) is a method of producing an image of the internal structures by passing an
x‑ray through the body.
The removal and examination of tissue, cells, or fluids from the body.
A condition in which the body’s immune system accidentally attacks itself.
Autoimmune lymphoproliferative syndrome.
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