Rare Disease Report

Rare Diseases in Rio: Rebecca Meyers (Usher Syndrome)

SEPTEMBER 13, 2016
RDR Staff
Name: Rebecca Meyers
Sport: Swimming
Event(s): 50m Freestyle, 100m Freestyle, 400m Freestyle, 100m Butterfly, 200m IM
Classification: S13, SB13, SM13
Height: 5-3
Weight: 124
DOB: 11/20/1994
Birthplace: Baltimore, Md.
Rare Disease: Usher syndrome
 
Rebecca Meyers won her third gold medal Monday night in Rio bring her total medal count from the 2012 and 2016 Games to 5 medals. (3 gold, 1 silver, 1 bronze). And she still has 2 more races at Rio to compete.
 
Meyers’ third gold medal of the Rio Games was in the women’s S13 400-meter freestyle, finishing the race in a world-record time of 4:19.59 (and breaking her own world record of 4:21.66). Rebecca also won gold in the 50 and 100 freestyle.
 
In discussing the most recent win, Rebecca told reporters the crowd helped, "It was amazing tonight. I mean look at it (the crowd). Everyone is up on their feet. I could feel the energy when I dove in and it kept me going through the entire race."

Deaf with Progressive Vision Loss

Meyers was born with Usher syndrome which has left her deaf and with progressive vision loss. She wears cochlear implants to hear but the progressive loss of vision is a bigger concern. In an interview she said her vision is “like looking at life through two straws.”
 
Rebecca also has balance problems and often uses a cane when walking. But in the water, balance and hearing loss are not a problem. And only occasionally, does the loss of vision affect her swimming. Mostly, when she bumps into another swimmer by accident.
 
In 2015, Rebecca won the Best Female Athlete with a Disability ESPY Award.

Michael Phelps and Rebecca Meyer

In a recent interview, Rebecca stated that one of her greatest inspirations is Michael Phelps. Rebecca said, "“I have looked up to him my entire career because he also trains in Baltimore. I have always admired his dedication to his sport and the countless hours he has put into it, coming to practice even though he didn’t want to. We all go through struggles but he just pushes through and he is the greatest swimmer in the world.”

What is Usher Syndrome

Usher syndrome is a genetic condition characterized by hearing loss or deafness, and progressive vision loss due to retinitis pigmentosa. Three major types of Usher syndrome have been described - types I, II, and III.  
 
Type 1 is the most severe form with patients born deaf and quickly lose vision. Type II, the type the Rebecca likely has, is characterized by hearing loss from birth and progressive vision loss that begins in adolescence or adulthood. People with Usher syndrome type III have progressive hearing loss and vision loss usually beginning in teens or twenties.
 
Approximately 50,000 people in the United States have Usher syndrome. 
 
There is currently no treatment for this rare condition.
 


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