Medical Mystery Leads Father of 2 to Cedars-Sinai

For most of his life, Jake Raden was active and healthy. A successful asset manager with a blue-chip financial institution, Raden traveled the world and worked out regularly. Except for managing a genetic predisposition for high cholesterol, Raden was rarely in a doctor's office.

But that all changed about four years ago when the 43-year-old father of two suddenly began losing weight, having migraines and trouble breathing, and experiencing debilitating bouts of major fatigue. He said he even became too weak to lift up his young children.

"I didn't know what was wrong with me," Raden said. "I saw my primary care doctor, an infectious disease specialist, a pulmonologist and a gastroenterologist. My liver enzymes were off the chart, suggesting liver damage, and one of the many CT scans I had revealed nodules all over my lungs. One doctor was convinced I had tuberculosis."

But Raden says despite those physicians' best intentions, no one had the answer or understood why he was getting sicker.

"I didn't know if I was dying. I didn't know if I needed to prepare a will and an estate for these little kids and my wife. It was brutal," Raden said. "One day I finally ended up at Cedars-Sinai's Emergency Department after having severe breathing problems. I was seen by Dr. Akhavan and that changed everything."

A Complex Disease

Bobak Akhavan, MD, is a pulmonologist and director of Pulmonary Sarcoidosis in the Sarcoidosis Program at Cedars-Sinai.

"Unfortunately, Jake's experience reflects a common challenge for patients with sarcoidosis," Akhavan said. "It's a rare and often misunderstood inflammatory disease that can affect multiple organs, most often the lungs, and can mimic other conditions."

Sarcoidosis occurs when the immune system mistakenly forms clusters of inflammatory cells-called granulomas-in healthy tissue. These clusters can cause lasting damage and affect the lungs, heart, liver, brain and other organs.

"I often hear from patients convinced they have advanced cancer because there was no clear explanation for all of their symptoms," Akhavan said. "The fear and worry that come with not knowing where to turn can be as much of a burden as feeling so unwell."

Under normal circumstances, the body fights some kinds of infections by forming granulomas, said Elizabeth Frame, MD, one of Raden's Cedars-Sinai physicians and director of the Sarcoidosis Clinic in the Division of Rheumatology.

"However, in sarcoidosis, those granulomas start forming healthy tissues, where there is no infection, and the resulting inflammation damages the affected organs," Frame said.

Approximately 200,000 people in the U.S. are living with sarcoidosis, according to the Foundation for Sarcoidosis Research. While the rare disease can range from mild to severe-and in rare cases may require organ transplantation-specialized care can significantly improve outcomes.

Cedars-Sinai is a founding member of the Foundation for Sarcoidosis Research Global Sarcoidosis Clinic Alliance (FSR-GSCA), which is committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis

Treatment Plan: It Takes a Village

At Cedars-Sinai, specialists across pulmonology, rheumatology, cardiology, neurology and other fields work together to evaluate patients with sarcoidosis, ensuring that all organs are assessed and treated.

"Because Jake's case was complex and involved multiple organs, our specialists worked together closely-reviewing his tests and sharing their perspectives in real time-to confirm the diagnosis and create a treatment plan," Akhavan said.

The multidisciplinary, evidence-based, approach to diagnosing and treating this rare disease is among the reasons Cedars-Sinai is designated a Center of Excellence in Rare Neuroimmune Disorders, including neurosarcoidosis, as well as recognized as a "Sarcoidosis Clinic of Excellence" by the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG).

"Most of the diseases that rheumatologists take care of affect multiple organs," Frame said. "We're accustomed to organizing lots of disparate information and integrating it into a complete picture so everyone can get a comprehensive understanding of the patient as a whole."

The Road to Recovery

With a diagnosis and treatment plan in hand, Raden received high-dose steroids and other therapies aimed at reducing inflammation and preventing further organ damage. Within weeks, his strength began to return. Lung function and blood tests, as well as CT scans, confirmed Raden's condition was improving.

"The art of treating sarcoidosis has to do with finding the doses and combinations of medicines that are best for a specific patient," Frame said. "The goal of treatment is always to help a patient live the healthiest, fullest, happiest life possible."

Today, Raden is in remission and back to the life he feared he might lose.

"I can breathe again and I have energy," Raden said. "I can exercise, I run around with my kids, and I can be of real help to my wife. Work is good. It's not an exaggeration to say that finding these experts and this special sarcoidosis program saved my life."

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