Living with a rare disease like idiopathic multicentric Castleman disease (iMCD) is never easy. You will need to monitor your symptoms, report them to your doctor, and stay on top of your dosing schedule.
Hear from the people who have been fighting iMCD for years, and learn how they have dealt
with some of the challenges you might be experiencing.
In 2005, Jessica began experiencing fever, night sweats, and swollen lymph nodes. After 14
long years, she found out that she has iMCD. Watch her story to learn about her journey to
In 1985, there weren’t any guidelines to diagnose iMCD. But that didn’t stop Carl from
getting an accurate diagnosis for his rare disease. Watch his journey to learn about the
path he took to finally get diagnosed with iMCD.
iMCD has troubled Frank for years. But with his wife Dina by his side, he was never going
to back down. Watch the video to learn about the ups and downs they faced during their
journey to diagnosis.
Share now to help us raise awareness so that people who might be suffering from this condition can get a proper diagnosis and receive the right treatment.
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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
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
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.
Human immunodeficiency virus.
A doctor who specializes in the branch of medical science that deals with cancers of the blood and
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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