LI Man, 20, Could Be Blind In 30 Days From 'Brutal' Disease

SAG HARBOR, NY — Christopher Backlund, 20, is losing his eyesight even more quickly than he ever could have imagined.

October is Blindness Awareness Month, according to the U.S. Department of Education, aimed at raising awareness about those living with blindness and impaired vision.

But for Backlund, the month has become all too real: When Patch first interviewed Backlund in August, he knew his situation was dire: In July, he was diagnosed with Lebers Hereditary Optic Neuropathy, which causes vision loss and often presents in young males — and told he could be blind within six months.

And now, those words are becoming frighteningly real.

"Since the last time we spoke, my vision has gotten a lot worse," Backlund told Patch this week. "I first got diagnosed with the disease in July and I was able to see perfectly fine in my right eye. Then, within the last three weeks, the vision in my right eye has gotten a lot worse. My vision in my left eye is completely shot. I can't see anything in my central vision. The disease primarily affects the central vision of your eyes."

According to information provided by MedicinePlus.gov: "Vision loss results from the death of cells in the nerve that relays visual information from the eyes to the brain (the optic nerve). Although central vision gradually improves in a small percentage of cases, in most cases the vision loss is profound and permanent."

Trying to explain the unthinkable, Backlund said: "It's very difficult going through this at my age. it's going to be a long time before a cure is found, My doctor thinks it will be about 10 to 15 years before a cure is discovered; it really depends on how fast stem cell research progresses."

Currently, Backlund said, the only option is gene therapy, "which is about one to three years out. Gene therapy has actually cured some people that have the disease, but only around 20 percent of people actually get cured from the gene therapy."

Living with diminished vision has cast a long shadow of what life ahead may become.

"It's impacted my daily life greatly," Backlund said. "I can no longer drive. I can no longer read. I also used to read about three books a week and now I can only listen to audiobooks."

Backlund, who has been honest about his plight on Facebook, said soon, he may not even be able to see well enough to post.

"It's gotten so bad now that I have to use a magnifier to read texts. The nerves in my eyes are dying rapidly," he said. "When I was first diagnosed, I didn't know what to think. All I knew was that it was a rare disease with no cure and that I would be blind within a year. My mom spent the last nine years of her life with the disease, and my grandmother also had the disease. At this rate it's about 30 days before I am unable to read or text at all."

Despite the overwhelming truth, Backlund said in the past months he's met many people who've helped to prepare him for the future.

"It's just difficult losing your vision at the age of 20. It's something I never would have expected. The diagnosis was shocking," he said. "A pastor recommended I read the book of Job from the Bible. It's a story of a man who has everything and has it all taken away as a way of God testing him. Maybe that's my purpose here, to be tested. It's depressing, but you can't ever give up hope."

In January, Backlund said the Wills Eye Hospital in Pennsylvania is proceeding with an experimental treatment called the genesite testing, "where they inject your eyes with someone else's genes. However, only one gene mutation is available for the experimental treatment. I got my blood tested to see what mutation of the disease I have and it hasn't come back yet."

Researchers are hopeful about gene therapy in treating LHON, a report by Vanderbilt University Medical Center said.

According to the National Library of Medicine, there is also a medication called Idebenone, which has been used to treat LHON patients.

"I've been in contact with other people who have the disease and they have been incredibly helpful in getting me set up for life once my vision is completely gone," Backlund said. One man reached out, whose own son was diagnosed with LHON a few years ago. Others have contacted Backlund to share their experiences.

"It gave me comfort speaking to other people with the disease, because of its rarity," he said.

As his eyesight fades, Backlund said he will need an aide. "My father took care of my mother who also had the disease, but because of his age he is unable to do that for me this time," he said.

The pressure of his diagnosis is exacerbated by financial concerns, Backlund said. "The only treatment centers are several states away," he said. Idebenone is expensive, he added. "That is money I don't have, unfortunately. My mother passed with no life insurance."

His father, he said, has only his pension.

"What scares me the most is what lies ahead," Backlund said. "My vision is going at the age of 20. I'll be unable to do a basic tasks that I've done my entire life. I'll be unable to use computer, a phone. I'll be unable to write. I'll be unable to see a TV. Everything around me — that I've called life for the last 20 years — is about to get drastically different."

What gives him the strength to go forward is the fact that his mother had the disease for nine years before she died, Backlund said.

"Another thing that gives me strength is the fact that there's a great community out there for people with the disease. Many people who have the disease have reached out to me since my diagnosis and have been incredibly helpful with everything. I met one woman whose son is 14 years old, and has the disease. We had a 3-hour phone call and she gave me a lot of information about the disease and treatments that may be available in the future."

LHON, Backlund said, is rare, and "brutal."

He added: "The disease starts in one eye and then spreads to the other eye within a few months. Because it's rare, there's really been no cure. It's a bizarre disease because the scientists still don't know what causes it."

There has been speculation, he said, that the disease may be triggered by smoke inhalation, but nothing is certain..

"It's a rare disease, one that I think needs more awareness," Backlund said.

Backlund has also been struggling with the sudden loss of his mother this summer and his grandfather, with whom he was very close, last year.

His diagnosis was devastating.

"I'm still kind of in shock," Backlund said in a past interview.

In December 2021 he noticed his vision getting worse, but said that it really wasn't that bad.

"I just assumed I needed a new prescription for my glasses and I thought nothing of it," he said. "It's slowly proceeded to get worse and worse, but it was only in one eye at first. Eventually, it got so bad that I could barely see anything out of my right eye."

Backlund went to the emergency room. The doctor couldn't immediately determine the problem, largely, Backlund said, because the disease is rare, affecting just 1 in 50,000, according to the Cleveland Clinic.

With possibly only days left before he loses his vision forever, Backlund feels an urgency to do the things that have long given his life meaning.

"There are a lot of things I wanted to do — and it's going to be very, very difficult to do those things soon," he said.

The past months have taught the 20-year-old lifetime lessons in resiliency, in relying upon inner conviction and strength to move forward.

"Nobody who ever achieved anything in life ever had an easy life," Backlund said. "Following your convictions means you must be willing to suffer the most. Nobody whoever lived a normal life ever became successful. You never give up, ever — because that is the worst thing to do. It's not what my mother would have wanted me to do. It's not what my grandfather would have wanted me to do. It's not what anyone wants me to do."

To donate to a GoFundMe set up to help Backlund, click here.