Did you know that July 23 is World Castleman Disease Day? Each year, this day is dedicated to bringing awareness to those who are affected by Castleman disease, including patients, family members, friends, physicians, and researchers.
Those who come together on this important day each year not only advocate for those currently affected by the Castleman disease, but they also honor those who have been lost. If you would like to join in on fighting Castleman disease and supporting those with it, there are a few things you can do on World Castleman Disease Day.
Ways To Support as a Patient
- If you are a patient, you can help researchers gain more insights into the disease by enrolling in the ACCELERATE registry
- As a patient, you can also donate samples to aid in understanding the disease
- Share your story on social media using hashtags such as #WorldCDday and #Castleman
Ways to Support as an Advocate
- Visit the Castleman Disease Collaborative Network (CDCN) website to learn more about the disease and events going on
- Donate or aid in raising funds for lifesaving research
- Hold a fundraiser on your Facebook or in your hometown dedicated to raising funds for CD research
- Share information about Castleman Disease and/or the CDCN on your social media using hashtags such as #WorldCDday and #Castleman
- Get yourself a World CD Day 2022 shirt that can be found here
- Wear blue on World Castleman Day to show your solidarity
- Open up conversations about Castleman Disease with your friends, family, and colleagues
For more information about World Castleman Disease Day click here.
Castleman disease (also called Castleman’s disease, giant lymph node hyperplasia or Castleman tumor) is a rare disorder that comes in two forms. Both forms cause abnormal cell growth, creating non-cancerous tumors and lymph node enlargement that affect the disease-fighting lymphatic system. However, in unicentric Castleman disease, there is only one solid growth localized in a solitary lymph node. The more lethal form of Castleman disease (multicentric) occurs when these growths are widespread. Because people with Castleman disease are often asymptomatic or exhibit common symptoms like fatigue, weight loss, and fever, Castleman is easily misdiagnosed as other associated lymphatic disorders. That’s why it’s key to be aware of Castleman’s most recognizable symptom: an enlargement in the armpit, neck, collarbone, or around the groin. Finding that lump under the skin is the best chance for a proper diagnosis, and with a diagnosis, patients can largely mitigate the effects of the condition with surgery or treatment.
Castleman’s cause is unknown. Overproduction of the protein interleukin-6 (IL-6), which is found within the lymph nodes and helps organize the body’s immune response to infection, may play a role in causing cell overgrowth. Speculation suggests this malfunction could be influenced by the human herpesvirus 8 (HHV-8). Almost everyone with the human immunodeficiency virus (HIV) has HHV-8, but even without HIV, 40-50% of people with multicentric Castleman disease have HHV-8. The how’s and why’s linking IL-6, HHV-6, and Castleman remain undetermined.
Symptom prevalence varies between the two types of Castleman disease:
- Unicentric:Often asymptomatic with the disease localized in the neck, abdominal region, or chest. If symptoms exist, they may include pressure in the chest or stomach, unexplained weight loss, and a lump located near the groin, neck, or underarm.
- Multicentric:Usually not asymptomatic, symptoms of multicentric Castleman disease include those found in its counterpart, as well as an enlargement of the spleen or liver, night sweats, fever, weakness, skin rash, or nerve damage in the limbs. Left untreated, this form of Castleman disease may lead to a co-morbidity, like lymphoma or infection, and cause organ failure and death.