Bayou Gauche father diagnosed with rare disease that attacks organs

When Ron Dufrene began experiencing shortness of breath and other forms of discomfort earlier this year, the Bayou Gauche resident knew there was a problem.

A trip to the doctor confirmed his worst fears.Dufrene was diagnosed with a rare disease called amyloidosis and signs of it were found in his heart, stomach, liver and spleen. It causes a substance called amyloid or abnormal protein usually produced in the bone marrow that can be deposited in any tissue or organ. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe occurrences can lead to life-threatening organ failure.

“It clogs up everything, like plaque,” Dufrene said. “It can stop your organs from functioning properly.”

His initial symptoms included a noticeable shortness of breath after climbing stairs and a constant feeling of fullness in his stomach as if he had eaten a large meal, even if he hadn’t had a thing to eat since the previous day.

The husband and father of two called the diagnosis “devastating” and said his days aren’t comfortable, with pains and aches comprising his new normal. He admits it hasn’t been easy, particularly as his chemotherapy treatment ramps up — he underwent his first round of that last week. Even in the face of this, he keeps positive.

Dufrene said he won’t allow the idea that he might not beat the disease to even enter his mind, maintaining the belief that in the end, he will emerge victorious.

He’s maintained his attitude, Dufrene said, through “lots and lots of prayers and family support.”

“That’s what keeps my spirits up,” he said.

Dufrene hopes to return to work sometime within the next six months. In the meantime, the financial toll is great.

Dufrene is taking weekly visits to Jacksonville for specialized treatment at the Mayo Clinic — the rare occurrence of the illness leaves few experienced enough to treat it — and those trips regularly take three days or more. Those weekly visits are scheduled for five weeks, then he will take one visit monthly for the next eight months.

Beyond the medical costs, travel and lodging add up. In response, a golf tournament will be held to benefit Dufrene on Sept. 9 at Cypress Lakes Country Club. Proceeds will go toward offsetting his medical and travel expenses. The fee is $100 per golfer or $400 per team. That price includes a round of golf, food, drinks and snacks. The format is a four-person scramble. Plans are to have two flights, the first at 8 a.m. and the next at 1 p.m. There will also be 50/50 raffle tickets for sale, as well as hole sponsorships for $150. For more information, contact Jeff Harrell at (225) 290-2847 or Brett Cazenave at (504) 427-0816.

Cazenave, who is among the tournament organizers, is a lifelong friend of Dufrene. The two attended Hahnville High School together and were teammates on the football team. They are also co-workers at OxyChem in Taft.

“He’s a very humble guy and very family-oriented,” Cazenave said. “I can tell you he’d do the same for you as you do for him. We’ve known each other for almost 30 years and we absolutely wanted to do something to help him out however we could. He’s a very positive person. He feels like he’ll be able to beat this.”

As of Monday, he said 11 teams had signed up. The goal is to have 40 teams.

Cazenave said there will be jambalaya, white beans and rice and beverages served and the day should offer a good time for a good cause.

Dufrene is grateful at the showing of support of his friends and coworkers.

“It’s been a godsend,” he said. “I have some really great friends – no doubt about it.”

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