Parathlete Rachel Weeks Raises Awareness on Retinal Diseases

By: Curt Case

Rachel Weeks spoke to students and faculty at The College at Brockport in the Liberal Arts Building on Monday night. Her mission is to raise awareness for retinal diseases through resources, athletics, and positive psychology.

Weeks is a parathlete who races multiple distances with an emphasis on Ironman events and marathons. Rachel has Usher syndrome, and is both visually and hearing impaired.

At two-years-old, Weeks realized she was hearing impaired. Her doctor told her it was just nerve damage. She was told to wear hearing aids and attend speech therapy but did not receive an answer as to why she was experiencing this.

At 19-years-old, she began to face major restraints in her life. During a regular checkup for contacts, Weeks began to experience vision problems. She was having difficulty with her peripheral vision and was rushed to a hospital.

After several tests, Weeks was diagnosed with Usher syndrome. She was told that over time her vision would decline and she would need to adapt as there was nothing the doctors could do to stop it.

“It was a little scary. I was like ‘what’s going on here? What do you mean I’m losing my vision,’” Weeks said.

Usher syndrome is a genetic disease with symptoms such as hearing loss and an eye disorder called retinitis pigmentosa. In order for Usher syndrome to develop, both parents need to be carriers and even so there is a one in four chance of those parents having a child with Usher syndrome. The odds were against Rachel as she contracted the disease but her sister Rebecca did not. However, Rebecca could still be a carrier.

“I am the mutant. I always joke about I’d love to be a Teenage Mutant Ninja Turtle. I get to be a mutant myself,” Weeks said.

Usher syndrome is the most common condition that affects both hearing and vision. There are three types of Usher syndrome. Type one is significant hearing and some vision loss. Type two is some vision and some hearing loss. Type three is when your vision and hearing starts to deteriorate in your 30s and 40s.

Out of all three types, Weeks’ doctors told her that she has the best one.

“I don’t know how I feel about that statement but I will leave it to him,” Weeks said.

Weeks became her own hero. What made her successful was pulling from as many resources as she could. Weeks is now married, a mother of two, and a professional counselor with a master’s degree. Not being able to drive, Weeks watched her kids instead of putting them in daycare. Eventually spending time at home took a toll on her. She needed to get out of the house, which is why she started running.

Using hearing devices, she searched for other ways to regain her freedom and experience her new world. She began running and soon discovered that it was her calling.

One day, her sister Rebecca mentioned that she was participating in a half marathon with her college roommate. Weeks became interested in running and discovered guide running. Guide running is when you run with someone beside you to literally be your guide.

“Man, that’s easy. I could do something like that,” Weeks said.

After doing research on blind and impaired running, Weeks found a New Zealand website on guide running. Weeks went to her sister and asked if she could be her guide as she ran.

“So literally it was me out in my neighborhood trying to figure out to run simultaneously where she could tell me where there bumps and curves to lead me,” Weeks said.

It turned out to be a disaster, but then Weeks found a group for guide running on Facebook. There was a woman with same conditions as her and after the woman heard about Weeks’ struggles, she recommend that she use a tether. The woman said she used a shoelace with her guide. The shoelace helped with her peripheral vision.

Since using the tether while running Weeks participated in her first 5K in Dec. 2011 followed by a 10K and a half marathon.

While competing, Weeks experienced other runners cutting her off as they did not realize she was a competitor.

Although she may face struggles in her ventures, Weeks became the first woman with Ushers syndrome to complete the Ironman Texas in 2013, a 17-hour test of her endurance and will.

“Triathlons and running is where I got comfortable and what I love doing and I still do to this day,” Weeks said.

Weeks is an advocate for letting people with disabilities enter the race, leading by example all the way to the finish line.


Photo courtesy of

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