The support you need to fight back against iMCD
Community Support
Connect with experts, patients, and caregivers
For people with idiopathic multicentric Castleman disease (iMCD), the road to diagnosis can be long and exhausting. Once you get an accurate diagnosis, your doctor will design a treatment plan that is tailored to you.
The following tools can help you get a better understanding of your symptoms, as well as keep track of them, so that you can have an in-depth discussion with your doctor.
Those who suspect iMCD as a possible diagnosis should use the Symptom Checker to
start a discussion with their doctor.
If you have been diagnosed with iMCD, this Patient Diary can help you manage your
iMCD.
Advocacy Groups
There are various websites and social media channels where doctors, patients, and caregivers
discuss the challenges they face in their fight against rare diseases like iMCD. We encourage
you to connect with others and stay up to date on the latest developments in the fight against
iMCD.
Castleman Disease Collaborative Network (CDCN) is a global initiative
dedicated to accelerating research and treatment for Castleman disease.
National Organization for Rare Disorders (NORD) is a patient advocacy
organization dedicated to individuals with rare diseases and the organizations
that serve them.
Global Genes was established to connect, empower, and inspire the rare disease community.
RareConnect is a place where rare disease patients can connect with others
globally.
Facebook Groups are a great way to connect with other patients or
caregivers. Each group has something unique to offer, whether you are looking
for support, community, or education:
Castleman Disease
Support Group
International Castlemans Disease Organization
The content and discussions in the above-mentioned websites and Facebook groups reflect the views of the people managing or participating in them. KnowiMCD.com bears no responsibility for the accuracy of the website content or the comments made in the groups and will bear no responsibility or legal liability for discussion postings. Please respect the rights and feelings of the participants while interacting with others.
ACCELERATE Patient Registry
ACCELERATE is a registry created and maintained by the University of Pennsylvania that collects medical data about people suffering from Castleman disease. The information is then shared with researchers and doctors, with the goal of improving treatments and treatment plans.
If you are a patient with Castleman disease, you can sign up for the registry and become part of this initiative.
Sign up for more on iMCD
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Your report
A diagnosis of idiopathic multicentric Castleman disease (iMCD) requires the presence of multiple swollen or enlarged lymph nodes. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. These symptoms alone are not enough to diagnose iMCD, as they could be signs of other diseases.
Talk to your doctor if you have any questions about this report.
Additional information about iMCD is available for healthcare professionals at KnowiMCD.com/HCP.
To protect your privacy, KnowiMCD.com does not save any of your information. Please be sure to download, save, and/or print this report.
Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting
Your report
A diagnosis of idiopathic multicentric Castleman disease (iMCD) requires the presence of multiple swollen or enlarged lymph nodes. In some patients, the swollen lymph nodes may not be visible and may require imaging tests to confirm their presence. These symptoms alone are not enough to diagnose iMCD, as they could be signs of other diseases.
Talk to your doctor if you have any questions about this report.
Additional information about iMCD is available for healthcare professionals at KnowiMCD.com/HCP.
To protect your privacy, KnowiMCD.com does not save any of your information. Please be sure to download, save, and/or print this report.
Possible tests
In order to confirm a diagnosis of iMCD, a doctor will need to perform tests to detect the presence of multiple swollen lymph nodes.
- Physical examination
- Lab tests—blood or urine test
- Imaging tests—CT scan, x-ray, MRI, PET scan
- Excisional biopsy
By performing some of the above-mentioned tests, a doctor will be able to eliminate the possibility of autoimmune, cancerous, and infectious diseases. An excisional biopsy of the enlarged lymph node can confirm the diagnosis of iMCD.
The road to diagnosis
iMCD is a rare disease that can be difficult to diagnose because it can mimic so many other diseases. It may take a while to receive an accurate diagnosis because your doctor must rule out several different conditions before suspecting iMCD.
You may start your diagnosis journey at your primary care physician’s office, where you may be referred to a specialist.
Preparing for your appointment
Here are some tips to help you have a conversation with your doctor:
- Write down any symptoms you’ve experienced, even if they may seem unrelated
- Share the results of this Symptom Checker with your doctor
By performing some of the above-mentioned tests, a doctor will be able to eliminate the possibility of autoimmune, cancerous, and infectious diseases. An excisional biopsy of the enlarged lymph node can confirm the diagnosis of iMCD.
Start the conversation
Here are some tips to help you talk to your doctor about iMCD:
- What kinds of tests might I need to confirm iMCD?
- Do I need to plan for follow-up visits?
- What treatments are available for iMCD? How will they affect my life?
- Do you have any educational materials that I can take with me?
- What else do I need to know about iMCD?
Notes:
© 2022 EUSA Pharma (US) LLC. All rights
reserved.
US-NPS-2200024 1/22
Healthcare professionals can find information about the latest diagnostic criteria and treatment options by visiting
Your iMCD Diary
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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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