When David Fajgenbaum entered medical school in 2010, he planned to become an oncologist. His mother, who died of cancer, inspired him to focus on the specialty. Then, during his third year, Fajgenbaum became incredibly ill, and his kidneys, liver, and other organs starting shutting down. Fajgenbaum was hospitalized and received a startling diagnosis.
In 2013, according to a report by CNN, Fajgenbaum was diagnosed with idiopathic multicentric Castleman disease. The condition presents a bit like an autoimmune condition and a bit like cancer, and is relatively rare. Only about 7,000 new cases are diagnosed in the US each year.
In patients with Castleman disease, cytokines go into overdrive. The immune signaling molecules cause the body to attack itself.
While Fajgenbaum, a former college football player, was in the hospital, he noticed “blood moles” – strange red spots on his skin. While his doctors were more concerned with his organ failure, Fajgenbaum felt like he was on to something important.
Fajgenbaum survived the initial incident, but was struck four more times over the course of the next three years. Each time, he was hospitalized for anywhere from several weeks to a few months.
Intense chemotherapy “carpet bombing” sessions were helping Fajgenbaum survive each time. He faced death repeatedly. During one of the relapses, his family even contacted a priest who read Fajgenbaum his last rites, though he ultimately survived.
Fajgenbaum managed to complete medical school and then started in an MBA program. He also founded the Castleman Disease Collaborative Network, began coordinating data-sharing initiatives between various labs, and started bringing together leading Castleman disease researchers.
Fajgenbaum was working to save his own life and, after reviewing his medical charts, he had an idea that wasn’t yet explored. He related the “blood moles” to a spike in vascular endothelial growth factor (VEGF), which may have been signaling the immune system to take action.
After making the connection, Fajgenbaum asked his doctor to prescribe him Sirolimus, an immunosuppressant usually used by those who received kidney transplants.
Once he began taking Sirolimus, Fajgenbaum went into remission. He has stayed in remission for five years.
Fajgenbaum hopes that his experience and discovery can help others, as well as encourage people to use similar techniques to find answers for sufferers of other rare diseases.