Jared Maynard used to be arguably one of the fittest men alive.
The father-of-three from Ontario, Canada, was an avid bodybuilder and powerlifter, regularly training six times a week while working as a physical therapist.
So when he came down with a case of the sniffles in January 2023, he shrugged it off as a cold that he would easily fight off.
But in just a matter of days, his skin turned yellow and he gradually became delirious.
Maynard rushed to the hospital, where a battery of tests revealed it was not a cold but hemophagocytic lymphohistiocytosis (HLH), a rare and life-threatening condition where the immune system starts to attack the body.
It attacked his liver and kidneys, putting him into multi-organ failure. Doctors determined the disease, which kills 40 percent of patients, in Maynard’s case was caused by Epstein-Barr, a virus that can lay dormant in the body for decades and normally leads to mononucleosis, or the ‘kissing disease.’
Maynard was placed on life support and hospice care for nearly two months before miraculously starting to recover. And, due to muscle wasting, it took another two months for him to relearn how to walk, sit, stand, speak and even breathe on his own.
He thought he was in the clear, but then five months later his peripheral vision started to disappear.
Jared Maynard is pictured with his wife and children before his battle with hemophagocytic lymphohistiocytosis
Maynard, pictured in the hospital in 2023, spent several weeks on life support and hospice before having to relearn how to do everything
‘I thought being on end-of-life care would be the last battle I had to face,’ the now 34-year-old said.
‘But the next one I literally couldn’t see coming.’
As a teen, Maynard had suffered night blindness, meaning his eyes had trouble adjusting to dark conditions, especially when driving. At 17, doctors told him he could not legally drive.
He was diagnosed at the time with choroideremia, a genetic eye disease affecting one in 50,000 Americans, or 6,000 people, most of whom are men.
The condition, caused by a mutation of the CHM gene on the X chromosome, causes progressive degeneration of the retina, the light-sensitive layer of tissue at the back inner surface of the eye, and the choroid, tissue at the middle of the eye’s wall.
For most patients, like Maynard, it starts with minor vision changes before eventually progressing to legal blindness, or severe vision loss that isn’t complete darkness.
‘It started off with night blindness. Then my peripheral vision was eaten away until only a narrow tunnel was left,’ he said.
Doctors had told him the condition likely wouldn’t progress until he hit his 50s or 60s. But they now believe his near-death battle with HLH accelerated the decline, potentially due to inflammation and cellular stress.
Now, Maynard believes it’s only a matter of time before his central vision vanishes as well.
‘I thought I had time,’ he said. ‘But everything declined faster than anybody expected. At 33, I suddenly couldn’t see my own computer screen. Not long after, my eye doctor said the words I was dreading out loud: “You’re legally blind.”
‘I’m only 34. I survived the disease that was supposed to kill me, only to find out that while I cheated death, I was blindsided in the process.’
Maynard, pictured above, is adjusting to his vision loss and is hoping to return to the competitive bodybuilding scene by the end of the year
‘Everything I do now runs on four words: you’re not done yet. That isn’t a promise that everything goes back to how it was. Some things don’t. Some scars stay,’ Maynard said
There is no cure for choroideremia, and treatments like gene therapy to manage progression are still experimental.
Maynard has recently purchased a white cane to help him get around and warn people of his vision impairment, though he is still getting used to it.
‘I was so scared of the noise it made that I barely touched it to the ground,’ he said. ‘Then I tripped over a bench I couldn’t see and went down in the middle of a packed airport.
‘I wasn’t just the blind guy anymore. I was the blind guy that face-planted in front of everyone. It was humiliating.’
But as he adapts to his normal, he’s not letting it break him. He is still working and uses assistive technology like screen readers to help him with day-to-day tasks. He is also in the process of getting a guide dog.
By the end of the year, he hopes to return to competitive bodybuilding.
‘Everything I do now runs on four words: you’re not done yet. That isn’t a promise that everything goes back to how it was. Some things don’t. Some scars stay,’ Maynard said.
‘But ‘done’ is only when you stop trying to become the person you want to be – and I’m nowhere near that.’
