Man discovers life-saving treatment for disease that nearly killed him

A man has discovered a life-saving treatment for a rare autoimmune disease that nearly killed him.

David Fajgenbaum, 34, told CNN he was hospitalised at the University of Arkansas in the US in 2013 and his outlook was so bleak a doctor told him to write his will on a piece of paper.

Just three years earlier, during his studies at the university to become a doctor, something began to attack his organs.

Dr David Fajgenbaum during treatment for idiopathic multicentric Castleman disease and after.
Dr David Fajgenbaum during treatment for his illness and afterwards. Source: ABC7 Chicago

He told the New York Post that day he finished an exam and walked himself into the emergency room.

It was the first of four attacks of the disease between 2010 and 2013 which nearly killed him.

“They told me my kidneys, liver, and bone marrow were shutting down,” he told The Post.

“My immune system was attacking my vital organs.”

He stayed in hospital for seven weeks and doctors believed he had lymphoma.

Four weeks later he returned to hospital and was diagnosed with idiopathic multicentric Castleman disease, a rare illness that affects the lymph nodes and related tissues.

The illness nearly took his life – during one relapse when his organs were attacked a priest even read him his last rites.

But despite undergoing a number of relapses and chemotherapy, he managed to graduate medical school and eventually discover a treatment.

Dr David Fajgenbaum during treatment for idiopathic multicentric Castleman disease and pictured with his wife Caitlin.
Dr Fajgenbaum underwent treatment for the disease between 2010 and 2013. Source: Facebook/David Fajgenbaum

Dr Fajgenbaum also founded the Castleman Disease Collaborative Network (CDCN) to accelerate research and treatment for his disease.

The doctor has now released a new book, Chasing My Cure, detailing how he discovered the life-saving treatment in a drug that was “hidden in plain sight”.

Red spots key to life-saving treatment

During his time as a student, he noticed red spots that looked like moles were appearing when he fell ill, but he claims doctors dismissed them.

Years later, after founding CDCN, Dr Fajgenbaum realised the red spots might be the key to fighting the illness.

"You learn a lot by almost dying," he told CNN.

Dr Fajgenbaum discovered the red spots were a result of a protein spike and contacted the US Food and Drug Administration about a prescription for Sirolimus to help fight the autoimmune disease.

Sirolimus is used to prevent organ transplant rejections and also has immunosuppressant functions.

"A drug that could potentially save my life was hiding in plain sight,” he said.

The doctor says he is now in remission and is hoping he can use more clinical trials to determine how the drug can help others.

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