In September 2009, Heidi Schroeder Martin began to experience ringing in her ears.
She initially thought it was an ear infection, and assumed it would go away. But it didn’t.
An avid guitar player who loves music and used to frequent rock concerts, Heidi thought she may have experienced a form of hearing damage.
Eventually she went to see her doctor, who couldn’t find the problem and referred her to an ear, nose and throat doctor at University of Wisconsin Hospital in Madison.
“They couldn’t find anything at first either,” said Heidi, 32, a Baraboo High School graduate. “They finally ordered an MRI and that’s when they saw a bunch of tumors.”
By Christmas 2009, Heidi was diagnosed with neurofibromatosis type 2, also known as NF2, a disorder that causes noncancerous tumors to grow within the nervous system. Tumors associated with NF2 commonly develop along the auditory nerve that carries information from the inner ear to the brain, according to the National Institutes of Health.
It’s not a common disorder. The NIH estimates the rate of NF2 may be about one in 25,000 people.
Heidi’s hearing deteriorated so fast, she didn’t have time to adjust. Today, she finds it hard to communicate with people. She endures constant headaches, the ringing in her ears sounds like a freight train, and the tumors on her spinal cord make her back sore. A former store manager, she now works part-time.
“Even if I can hear your voice, I can’t understand the words,” Heidi said. “I don’t have the comprehension that normal people have. I can’t understand or hear my kids most of the time, which is just heartbreaking to me ... There’s so much frustration, fear and pain with NF2.”
She also has lost the ability to play the guitar, a craft she honed for 22 years before the symptoms began to appear.
“Heidi’s talent was that she could transcribe,” said Stephanie Luce, Heidi’s mother. “She could hear it and play it. And of course now that’s completely out.”
Heidi said she wants to bring awareness to NF2 to ensure that others have more treatment options available to them in the future.
“My kids have a 50 percent chance that they have inherited this from me,” Heidi said. “I want them to have a better chance at treatment than what I have.”
Heidi and her friends will try to raise the issue during a benefit that will be held Sunday at the Pumphouse Sports Bar & Grille in Baraboo.
The event will feature a 5K run/walk, a raffle and live music from the acoustic rock band Never Odd Or Even.
Eighty-five percent of all donations will go to help Heidi pay bills that insurance doesn’t cover. The remaining 15 percent will go to AdvocureNF2, an organization that works toward a cure for NF2.
Heidi will undergo surgery Sept. 27 to get cochlear implants, small electronic devices that provide the sense of sound to deaf people.
“We started out just wanting to hold something to help her out financially,” Stephanie said.
The group, which calls itself Heidi’s Song, has plans to start a non-profit that will continue to raise funds for NF2 research and advocacy.
“So few people know about NF2 and there’s only one real group trying to bring awareness to this disease,” Stephanie said. “Now the plan is to make this an annual event.”
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