A man suffered agonizing ‘suicide disease’ until coming to CT. ‘Impossible is possible’ he says

Hartford Courant – Tuesday, May 6, 2025
By Pamela McLoughlin

Rafael Azevedo suffered for nearly 10 years with a condition so painful in his face and ear that it’s known as the “suicide disease” because so many sufferers have had thoughts of or attempts at death by suicide.

But Azevedo said that was never an option in his case because he has a strong faith in God and endless hope, both instilled by his mom in Brazil.

“The worst pain in the world cannot compare to the greatest strength: love,” he said through an interpreter. “What I try to convey to people is to value life. Because everything passes, but love does not.”

Azevedo, 29, his wife, Luana, and sister Barbara, natives of Brazil, literally traveled the world looking for a cure for the debilitating condition – to the tune of $100,000 and they found it right here in little Connecticut at UConn’s John Dempsey Hospital, where doctors had expertise in the conditions, tympanic plexus neuralgia and intermediate nerve neuralgia.
The couple came to UConn because of the ability of surgeons, Dr. Ketan Bulsara and Dr. Daniel Roberts, co-directors of the Cranial Nerve and Brainstem Disorder Program, to treat his conditions.

Rafael Azevedo had the surgery in 2023 and the three have remained living in Avon.

“Before surgery it was unbelievable. He couldn’t do anything,” including sleep, said Luana. “Now he’s able to study and lead a normal life. This is incredible. It’s really a miracle.”

Rafael Azevedo is not only living a “normal life,” but he has big career plans for the future and needs some help once more.

Doctors Roberts and Bulsara saved the quality of Rafael Azevedo’s life by performing a 10-hour surgery to reposition a blood vessel that had been resting on a nerve in his brain. The condition is known as “neuralgia of multiple cranial nerves.”

“Rafael has had an excellent outcome.” Roberts said. “What’s excellent about this is he really was non-functional and now he wants to become a pilot. We’re all excited about him becoming an aviator in the future.”

Roberts said the condition is “extremely rare,” less than one in a million. He said Rafael Azevedo had “intractable pain,” and noted the condition is referred to as the “suicide disease.” No one knows the cause.

“Rafael is an amazing person and a kind soul,” Roberts said. “His success is the result of his diligence and his family’s love for him.”

Rafael Azevedo said he’s improving every day but still has some headaches from where they cut his skull for the surgery.

“He’s very excited about learning aviation and English,” Luana said.

Now that he’s mostly out of pain, Rafael Azevedo is working on becoming an airline pilot, a dream he’s had since childhood.

During the “awful pain” he focused on studying Boeing and Airbus manuals, and he vigorously trained on the advanced computer he had set up at home to run flight simulations, Luana said.

He’s also looking for sponsors to help pay for flight school, as Rafael Azevedo spent all the money he had saved on the looking for a cure journey.

Luana said Rafael visited the airport every weekend with his father as a child, but when Rafael’s time for college came they couldn’t afford airline pilot school.

So instead, he went to school for IT and worked in the field to save money for tuition to become a pilot. Then, his condition took over.

When Delta Air Lines officials heard about Rafael Azevedo’s pilot dreams through publicity on his medical condition, they provided one of the happiest days of his life by inviting him to their headquarters in Atlanta.

Azevedo visited Delta’s largest technical operations center in North America and spoke with Delta employees, meeting experienced pilots who train others.

He also got to operate flight simulators of the B737 and A320 airplanes.

“Today I am being reborn. It’s a miracle to be here today,” he said after the Delta flight simulation training experience.

“It’s God giving me a second chance. I want to thank everyone for welcoming me with so much love here at Delta. Dr. Daniel Roberts and Dr. Ketan Bulsara at UConn Health were always very confident that my surgery was a success. They were very excited when I told them I would be coming to Delta Air Lines.”

Luana said she finds her husband “very inspiring,” because he never complained through the unbearable pain.

The pain has been described as an electric shock feeling and unrelenting stabbing pain.

“Even feeling pain 24 hours a day he never gave up,” she said, noting the condition is “invisible,” making it all the more difficult to cope. “He’s been through torture.”

Their their worldwide travel took them to Germany, back to Brazil twice, was complicated by COVID-19 and involved lots of bureaucracy and communicating with politicians,

His case eventually reached the United Nations General Assembly and has led to a new public policy proposal in Brazil for rare diseases.

Luana, who graduated from law school in Brazil, but has not taken the equivalent of the bar exam in that nation, handled legal issues and Barbara, an international relations expert, handled the politics and bureaucracy.

“The impossible is possible,” Rafael Azevedo said.

The couple’s fundraising effort is here: https://shorturl.at/M0ZWx. Anyone struggling with thoughts of self-harm can call 988, the Suicide and Crisis Lifeline.

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