For many doctors, Castleman disease seems impenetrable.

Not only is the disease incredibly rare (only affecting maybe 30,000 people in the United States), its innocuous smattering of symptoms are easily overlooked.

• Enlarged lymph nodes?
• Night Sweats?
• Fever?

Check the box for one or all, and you may have Castleman disease. Or you might have lupus. Lymphoma. Heck, maybe you’ve got an infection.

Castleman disease lacks official diagnostic criteria, so despite the viability of surgery and effective treatment, Castleman disease-expert Dr. Frits van Rhee claims “people will die of this disease because they will not get the correct diagnosis.”

But van Rhee is determined to make a difference.

Here are 3 ways he’s throwing himself into battle:

1. Rhee cofounded the Castleman Disease Collaborative Network (CDCN) with Dr. David Fajgenbaum, that fights the disease with research, resources, and sorely-needed information

2. That foundation is creating a patient registry and establishing imperative tracking codes to see who’s being affected

3. Heralded by van Rhee, funds are being raised for Castleman disease research, which he’s using to analyze the biology of the disease

Rhee really is this community’s white knight, and he’s opening the castle(man) gates for better understanding and treatment options.

You can go to the CDCN for more resources about Castleman disease.

Also be sure to read up on siltuximab to hear how this advanced medication increases life expectancy for people living with multicentric Castleman disease.

Van Rhee is storming the insurmountable odds and pulling medical understanding along with him.

What do you think about his efforts? What does the Castleman disease community need? Talk about it here!