A man with the 'worst pain in the world' came to CT for help. Then he ...

Rafael Azevedo, a resident of Brazil, is suffering from what he calls "the worst pain in the world," two rare ear diseases known as tympanic plexus neuralgia and intermediate nerve neuralgia.

"It's a tremendous pain. And what I have to do is to keep my emotions in balance," Azevedo said through his physical therapist and interpreter, Carlos Santos.

Azevedo and his wife, Luana Diniz Tormin, are renting an apartment in Connecticut because Tormin was invited to speak at the United Nations to make a humanitarian request on behalf of her husband during an event focused on rare diseases.

Courtesy of Luana Diniz Tormin
Luana Diniz Tormin outside the United Nations

The U.N. General Assembly had passed a resolution in 2021 on addressing the challenges of people living with rare diseases. 

But they also are in Connecticut because the only doctor who they believe can help them, Dr. Daniel Roberts, is on the staff at UConn Health. He wrote the only paper they have found on the internet about treatment of Azevedo's condition.

However, the surgery costs $76,000, according to Santos, and Azevedo is not eligible for public health coverage because he is not a Connecticut resident.

"We need to raise all the money to do the first procedure," Santos said. "The budget is $76,000, and for us it's a lot because our currency works five times less than the dollar, and we weren't expecting such a high budget. So we came here and we need to raise the rest of this so Rafael can start the treatment."

Courtesy of Luana Diniz Tormin
Rafael Azevedo, who suffers from two rare ear diseases, outside UConn Health in Farmington

"I believe it's unfair because I'm going through so much pain," Azevedo said.

They have started a GoFundMe campaign, seeking $65,000, but have raised just over $9,300 so far.

Tormin said the couple is talking to companies as well, seeking donations to help pay for Azevedo's surgery. And they are receiving support from a non-governmental organization, Mantena Global Care.

Lauren Woods, a spokeswoman for UConn Health, issued a statement, saying, "UConn Health surgeons want to help Rafael. Weeks ago they graciously offered the family to travel to his home country of Brazil to help doctors there perform the procedure."

She added, "As our doctors and staff would be more than willing to do this surgery at UConn Health, the family has communicated that they currently do not have the funds to cover this high-cost surgery. As a state agency UConn Health is not able to cover the cost, and is not aware of any funds to cover the cost of surgery in Connecticut. We will continue to stay in touch and support Rafael and his family."

Tormin said the surgery needs to be performed in this country because of the advanced technology available her.

"We came here not just because of the doctors but to have the security of the hybrid room," she said. "The hybrid room that they have at the hospital can avoid a stroke and can avoid many other side effects that the surgery could cause. When a person has a hyper-rare disease, the chance to die, the chance to have complications is much more than common surgery."

Azevedo wants to become a pilot, and anything that goes wrong could jeopardize that dream, she said.

"Imagine feeling the worst pain in the world located in the nerves of the ear," Tormin said. "It's something horrible. So he feels this pain 24 hours a day for nine years."

Azevedo has spent time studying flying in an aircraft simulator. "And it's very beautiful to see," Tormin said. "He cannot complain, he is suffering all the time. He just says, I'm going to make it. I'm going to be cured and I'm going to be the best pilot of the world. … He knows how to play seven instruments."

"Rafael is in a critical state," Santos said. "The treatment he needs is urgent. … The doctors are ready to do the surgeries, and they really want to do it. They are sensitized by this case, and we just need to get through this financial part."

Tormin said Brazilians with rare diseases must appeal to the Supreme Court to receive treatment. "And it's very difficult to win this process," she said. "It's very difficult and many of them are not able to receive treatment and die. So we propose a way to receive the treatment without going to Justice, an administrative way to receive those treatments."

Brazil has universal health coverage, so Tormin said he should be supported in this country by Brazil, but he is not.

"I travel this world to find my cure," Azevedo said. "I hope God blesses me and everything goes right.  I hope to be the best pilot in the world, and I will take good care of all people in my family. Today, I know what it's like to go through the worst pain in the world.

"If I win this battle, I promise to help a lot of people. I can't stand this pain in my life anymore."

Ed Stannard can be reached at estannard@courant.com.

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