Boy suffers from little-known eye condition

Imagine your eyes constantly moving side to side without cessation and seeing one image at a time in a choppy fashion instead of a continuous flow of images; that’s life for James Fuhrer.
Fuhrer, 7, of Berwick, who just started the second grade at Holy Cross Elementary, has nystagmus.
Nystagmus is a neurological condition that causes involuntary eye movements and reduces vision.
When a doctor told Fuhrer’s mother, Mary Alice Fuhrer, that his eyes move back and forth involuntary, she thought that was just his way of focusing, she said. “I didn’t see anything wrong,” she said.
When James Fuhrer was a baby, his parents just thought his head tilt was cute and that he was posing when the family took photos, she said. “Then we learned that that was his way of stopping his eyes or slowing his eyes the most,” she said.
Each person with nystagmus naturally finds a head posture where their eyes shake the least, Mary Alice Fuhrer said. Though no definitive statistics exist for how many people have the condition, rough estimates show about 1 in 3,000 people have it in the U.S. and 1 in 1,000 in the United Kingdom, James Fuhrer’s father, Tony Fuhrer, said.
James Fuhrer was diagnosed at nine months old in early 2008. He had successful surgery to correct his head posture, Mary Alice Fuhrer said.
During the surgery, the doctor cut his eye muscles and reattached them, which caused James Fuhrer to be able to hold his head straight, his mother said. Now, if he looks to the side, his eyes start moving more rapidly, she said.
“Then we come home, and he would run into door frames,” Mary Alice Fuhrer said. The TV remote could be directly in front of him, and he would not see it, she said. “So I knew something was wrong,” she said.
Mary Alice Fuhrer found out about the American Nystagmus Network, and the family has become so involved with the group that they convinced the organization to hold its national conference in July 2015 in New Orleans, Mary Alice Fuhrer said.
The couple worked with friend Michael Tamporello to put together a presentation to show why the conference should be in New Orleans, and the board accepted it, Tony Fuhrer said.
In 2009, the Fuhrers went to their first American Nystagmus Network conference in Pittsburgh. While they were there they took their son to one of the few specialists in nystagmus in the country, Mary Alice Fuhrer said.
The specialist said most doctors are not familiar with nystagmus because the condition is covered with two sentences in one textbook during medical school, Mary Alice Fuhrer said.
The majority of people with nystagmus have an accompanying condition, but James Fuhrer does not have any other condition, Mary Alice Fuhrer said. Albinism is common in people with nystagmus, she said. Nystagmus is also common in multiple sclerosis patients, Tony Fuhrer said.
Nystagmus is often the lesser of conditions patients have and does not usually get as much attention as the other disorders, he said. The American Nystagmus Network is focused specifically on helping people who have nystagmus, he said. Tony Fuhrer now serves as treasurer of the American Nystagmus Network. In 2010, Tony Fuhrer became a board member of the network.
Glare and stress reduce James Fuhrer’s vision and increase his eye movement, she said. James Fuhrer might start out the school day with 20/40 vision but may drop to 20/70 vision by lunchtime, she said.
The United Kingdom has a more active nystagmus network with paid personnel instead of the American network, which is composed entirely of volunteers, Mary Alice Fuhrer said.
The American Nystagmus Network has teamed with Nystagmus Network UK to host the second international nystagmus awareness day on Nov. 5 called “Wobbly Wednesday,” Tony Fuhrer said.
James Fuhrer can see what other kids see, but doing so takes his body an enormous amount of effort, she said. “With his personality, he doesn’t give up. He’s going to make sure he is going to do what’s expected of him,” Mary Alice Fuhrer said.
Tony Fuhrer said nystagmus causes James Fuhrer’s brain to take longer to process the images he sees. The images appear to him one at a time as his eyes move back and forth instead of the fluid sequence of images that people without the condition seem to see, Tony Fuhrer said.
In 2010, Tony Fuhrer started a golf tournament in Patterson to raise money for the network, and the tournament has made about $55,000 in five years.
James Fuhrer cannot play many sports, but golf is one sport he can participate in because the ball is stationary until he hits it, Mary Alice Fuhrer said. He enjoys building things with LEGOs and excels at activities where he can be in close proximity to an object or objects, she said.
He has suffered some head injuries from running into things due to his condition, she said.
“It’s very hard to kind of explain to his teachers because, when you look at him, you think he’s fine,” Mary Alice Fuhrer said. He compensates wonderfully with his memory and his hearing instead of having to rely solely on his vision, she said.
The American Nystagmus Network is currently going through its annual fundraising campaign called “10/10 for a Cure” where people are encouraged to donate $10 to the network and forward the email to 10 more people, Tamporello said in an email.
To donate to the campaign, visit https://www.crowdrise.com/1010ForaCure. To learn more about the American Nystagmus Network and nystagmus, visit www.nystagmus.org.