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Reigning Mrs. World, of Lutz, shines light on retinitis pigmentosa

Reigning Mrs. World April Lufriu, 44, of Lutz was diagnosed with retinitis pigmentosa in 2010. She works to raise awareness of the disease and research dollars for an effective treatment.

Reigning Mrs. World April Lufriu, 44, of Lutz was diagnosed with retinitis pigmentosa in 2010. She works to raise awareness of the disease and research dollars for an effective treatment.

April Lufriu is the reigning Mrs. World, and has the crown, sash and gowns to show for it. But these days, the Lutz woman measures her accomplishments not with titles and sparkles, but by a simple show of hands.

It's how she can tell whether getting into the pageant business is paying off in the way that matters most to her.

"I was speaking at a meeting of Tampa Bay Newcomers, and when I asked how many of them had heard of RP, probably 25 hands out of the 100 people there shot up,'' she told me last week. "I was so floored.''

RP is retinitis pigmentosa, a degenerative eye condition that leads to blindness. And 25 hands is impressive, given that not long ago maybe one or two would have gone up, she said.

Lufriu's sister Melissa Escobio was diagnosed with RP in 1989. The sisters formed the Tampa chapter of the Foundation Fighting Blindness, and worked hard to raise awareness and research dollars.

Then, on a single day in 2010, Lufriu and her children Brandon and Savannah all received the same devastating diagnosis.

"As a mom I really had a hard time dealing with it,'' Lufriu told me. "That's when I had to get myself together and get a plan in place. I was tired of people saying, 'I don't know what RP is.' ''

Lufriu, now 44, had competed in pageants a couple decades ago, and knew it was a great way to get attention. So she got back in pageant shape and won the Mrs. Florida title. Then Mrs. America. Now, the world.

How's it working out for RP?

"When I go to make a phone call, as soon I say I'm the reigning Mrs. World I get their interest and that gives me that extra time to say what I'm trying to do,'' she said. "The title has opened so many doors.''

She is quick to say, however, that much of the credit goes to macular degeneration, another serious eye disease that is far more common than RP.

Macular degeneration has grown more common as the baby boom generation ages. Plus, science has made widely publicized advancements in treatments.

"We're on their coattails,'' she said. Awareness of macular degeneration "is helping people with RP and other visual impairments get attention.''

With corrective lenses, Lufriu can still see well enough to drive. It is not evident to others that "the whole world is a blur'' when she takes off her glasses, or that it is getting more difficult to see at night.

"Because people can't see what I see, they think I'm normal,'' she said. "If I make an appearance anywhere, I have to get to the mic and say a few words. Then it's a whole different thing. There are so many people with so many health issues, and now they know that I can relate.''

In particular, she can relate to parents whose children face health challenges.

"I'm trying to train my children to enter that world of darkness,'' she said.

RP often progresses more quickly in males, and that's been the case for Lufriu's son Brandon, who at 14 is having night vision problems. Daughter Savannah, 9, is less affected so far.

Difficult as it is to cope with losing her own vision, Lufriu says at least Brandon "knows I'm right there. When my son says, 'Mom, I didn't see that,' I can say, 'I know, me too.' ''

Tonight, Lufriu is hosting a grownups-only fundraising event in Tampa called A Cure Is in Sight. Everyone who wants to dress up and enjoy a casino theme night, food, cocktails and a live band is welcome.

"It's just another way for us to have fun and raise money,'' said Lufriu, who on top of all her advocacy efforts also works with her husband at their south Tampa marble business. Oh, and she sells products on Home Shopping Network, too.

"All the speaking events, the fundraising events, give me a purpose,'' she told me as she was about to go on the air.

"I feel like I've got my boxing gloves on and I'm kicking blindness in the rear.''

What is retinitis pigmentosa?

• RP is an eye disease that damages the retina, the layer of tissue at the back of the inner eye that converts light images to nerve signals and sends them to the brain.

• It can run in families

• It is uncommon, affecting about 1 in 4,000 Americans

• Symptoms often first appear in childhood, but severe vision problems do not usually develop until early adulthood.

• Symptoms can include decreased vision at night or in low light, loss of side (peripheral) vision, causing "tunnel vision"

• In advanced cases, central vision is lost.

• There is no effective treatment yet.

Source: National Library of Medicine

If you go

A Cure Is in Sight

The event is tonight, 7 to 11 p.m., at the Lions Eye Institute, 1410 N 21st St., Tampa. Go to www.ACureIs

InSight.com, call (813) 478-6116, or get tickets ($40 per person, $70 per couple) at the door.

Reigning Mrs. World, of Lutz, shines light on retinitis pigmentosa

08/07/13 [Last modified: Thursday, August 8, 2013 4:41pm]

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