Beauty speaks: Raising awareness about retinitis pigmentosa

If you were to ask April Lufriu, crowned Mrs. America in 2011 and Mrs. World in 2012, what the secret to her success has been, she wouldn’t hesitate. It is her driving need to raise awareness about the disease that she, her sister, and her children all share—retinitis pigmentosa (RP).

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April Lufriu blinked under the bright stage lights in disbelief before fully comprehending what had just happened. Two beautiful women in glittering gowns swooped in and crowned her Mrs. World 2012. Reality set in. That’s when, tiara firmly in place, the beaming Tampa Bay pageant winner walked the stage, struck a pose, and waved to the cheering audience. She’d done it. Now she could travel the world and raise awareness about retinitis pigmentosa (RP).

Retinitis pigmentosa in the spotlight
The story of Lufriu’s journey to Mrs. World began in 2010 under a different set of lights. The kind that an ophthalmologist uses. The Tampa Bay mother of two stood in a doctor’s office and watched as the ophthalmologist shone a light into the pupils of her son, and then her daughter. The conclusion was swift and devastating: retinitis pigmentosa.

After completing her children’s eye exams, the ophthalmologist encouraged Lufriu to take Brandon and Savannah, then 10 and 6, to a retinal eye specialist for further testing. Numb from shock, she and her husband made the cross-state trip. Once there, the retinal specialist not only identified Savannah’s form of RP as mild and Brandon’s as severe, in a stunning turn of events he also diagnosed Lufriu with RP.

Lufriu knew what an RP diagnosis might mean. She’d grown up watching her older sister, Melissa, slowly lose her eyesight from RP, a hereditary degenerative retinal condition that causes blindness. Melissa and she had founded the Tampa Bay Vision Walk to raise money in support of the Foundation Fighting Blindness’ (FFB) research efforts. Through that volunteer work, Lufriu had met and even counseled many mothers grieving the loss of their child’s eyesight. She just never imagined that she would one day be the one grieving.

From anguish to advocacy as Mrs. World
After two months of being paralyzed by depression, April Lufriu threw herself back into local volunteer work but didn’t feel like her efforts were making enough of a difference. “It was really, really frustrating to try and get anybody to listen. I needed an audience,” said Lufriu. That’s when she decided to compete for Mrs. Florida. “We were diagnosed in February 2010, and by May, I had decided to enter the Mrs. Florida America pageant.” She had two weeks to prepare.

Lufriu’s mission was to gain a platform and then advocate on behalf of the retinitis pigmentosa community. She wanted to raise money and support researchers seeking treatments or cures. She knew that if she could win the title of Mrs. Florida, people would pay attention to her story. Even though she didn’t win that contest, Lufriu was thrilled to find out that she had won the interview portion for the pageant. In fact, her story and the passion with which she told it was so compelling that someone from the pageant called her after the event. “He told me, ‘April, you really need to go back. Your story was just unbelievable, and you blew the judges away.’” His advice for her next attempt was to become a little more polished.

“I wasn’t there for parades and photo shoots. My crown and banner opened doors for me. That was my whole mission.”

Lufriu spent the next year honing her public speaking skills and refining every little detail in the way she carried herself. She strengthened and flexed her interviewing skills like an athlete does her muscles. In February of 2011, April Lufriu was ready. She not only went on to win Mrs. Florida, six weeks after that she also took the title of Mrs. America. It was her story and her preparation that catapulted her to victory.

“When I sat down to interview with the head judge, he asked ‘What are you going to do to make a difference and make us proud?’” she said.  Lufriu, with support from the FFB, was armed with a solid business plan that spelled out how she would leverage her role as Mrs. America to raise money in the fight to stop retinitis pigmentosa—and save her son’s vision. “I blew the judge away,” said Lufriu. “He didn’t say two words!” One year later, even more poised and prepared, April Lufriu made history when she was crowned the oldest and shortest (5’4”) Mrs. America since the first year of the contest in 1979. She was 41 years old.

Lufriu reigned as Mrs. America for eight months before achieving her next extraordinary accomplishment: Mrs. World 2012. The fireball from Florida once again shattered preconceived notions of what a pageant winner should be. At 42 and still only 5’4” tall, April Lufriu became the shortest and oldest winner of the world crown and also the first Mrs. World with a visual impairment. If you ask Lufriu how she accomplished so much, in such a short period of time, she doesn’t hesitate in her answer. “I was a mom on a mission!”

 Lurfriu during her crowning moment as Mrs. World.

As Mrs. World, Lufriu traveled the globe for three years, sharing her story and raising awareness about RP. Her efforts touched the lives of people everywhere who were living with an inherited retinal disease. Although Lufriu has hung up her tiara, she still offers herself as a resource to anyone with questions about raising children with an inherited retinal disease. Certainly, Lufriu misses many elements of being Mrs. World—the global stage, the travel, and the glamour—but is quick to point out that it was never about the crown in the first place.

“To be classified as an ambassador for the blind and visually impaired, to me, is a far better title than being Mrs. America and Mrs. World,” said Lufriu. “I wasn’t there for parades and photo shoots. My crown and banner opened doors for me. That was my whole mission.” Lufriu teaches all of us that in the face of even the most devastating circumstances, the only real option is action. Congratulations, Mrs. World. And thank you.

Read the story of how April navigates parenting children with vision loss.

 

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