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Need To Know > Fitness and health > ‘I lost 40 pounds from a rare disease – my body was eating itself’
a 17-stone bodybuilder, rapidly lost his weight and ability to speak due to hemophagocytic lymphohistiocytosis (HLH). Despite organ failure and delirium, his fitness saved him during five weeks on life support, enabling his remarkable recovery.
Fitness and health

‘I lost 40 pounds from a rare disease – my body was eating itself’

Molly Pennington
Last updated: May 20, 2024 1:54 pm
Molly Pennington Published May 20, 2024
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Jared in hospital, shortly after having his tracheostomy out. (Picture: Jam Press)
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A bodybuilder, who plummeted three stone in five weeks and lost the ability to speak, has shared what saved him from a terrifying disease.

Dad-of-three, Jared Maynard was diagnosed with hemophagocytic lymphohistiocytosis (HLH), a severe inflammatory syndrome, at the beginning of 2023 after a short bout of illness.

He quickly declined, suffering delirium and organ failure, and doctors began to believe they had no choice but to administer palliative, or end-of-life care.

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But, after five weeks on life support and a “miracle” turnaround, Jared did recover.

“During those weeks on life support, I was too ill to receive much nutrition through the feeding tube that was inserted,” he told Need To Know.

a 17-stone bodybuilder, rapidly lost his weight and ability to speak due to hemophagocytic lymphohistiocytosis (HLH). Despite organ failure and delirium, his fitness saved him during five weeks on life support, enabling his remarkable recovery.
Jared on life support. (Picture: Jam Press)

“That meant that my body had to rely on the muscle I already had to sustain me.

“I was admitted to the hospital weighing 193 pounds (87.5kg) and woke up in the ICU weighing about 150 pounds (68kg).

“My doctors told me that without me being as fit and strong as I was going in, I likely wouldn’t have made it through.”

Jared, his wife, Ashley, 32, and their three daughters, Elizabeth, 6, Mary-Claire, 6, and Cecilia, 3, all came down with a cold last January.

a 17-stone bodybuilder, rapidly lost his weight and ability to speak due to hemophagocytic lymphohistiocytosis (HLH). Despite organ failure and delirium, his fitness saved him during five weeks on life support, enabling his remarkable recovery.
Jared with his wife, Ashley, and their three daughters, Elizabeth, Mary-Claire and Cecilia. (Picture: Jam Press)

After a week, Jared’s family began to recover. But he was only getting worse.

After his lymph nodes swelled to the point where they felt like “mountain ranges” under his skin, Jared went to see his doctor, who initially thought he had mononucleosis, a viral infection.

Then his skin turned yellow and his liver began to fail.

Within six days, Jared was on life support.

He’d been diagnosed with hemophagocytic lymphohistiocytosis (HLH), a severe inflammatory syndrome that occurs after a strong activation of the immune system.

In Jared’s case, it was a response to the mononucleosis infection caused by the Epstein-Barr virus.

Jared, a physiotherapist, strength coach and entrepreneur from Ontario, Canada, said: “My liver and kidneys were failing, along with other organs. I had to be sedated, ventilated and put on dialysis.

“I don’t have much memory from when I was diagnosed because of the delirium I was experiencing and the sedative drugs that I was placed on.”

Jared’s health rapidly declined.

He said: “The treatment for HLH is a protocol involving chemotherapy among other things, but I was too sick to receive the full dose.

a 17-stone bodybuilder, rapidly lost his weight and ability to speak due to hemophagocytic lymphohistiocytosis (HLH). Despite organ failure and delirium, his fitness saved him during five weeks on life support, enabling his remarkable recovery.
Jared in hospital. (Picture: Jam Press)

“I began to recover after that last treatment, much to the surprise of the doctors and nurses in the ICU. It was enough to earn me the nickname ‘Miracle Man,’ in fact.”

Jared was on life support for a total of five weeks. His doctors credit his survival to the fitness and muscle mass he had developed through years of weight training.

Jared’s recovery has been long and difficult. He had to learn how to breathe, speak, and swallow on his own again. He also had to learn how to sit, walk and stand.

After almost four months in the hospital, he was finally allowed to return home in May 2023.

He said: “I was in constant pain for months during and after my hospital stay. I have nerve damage in my feet, presumably from the chemotherapy. I’ve also lost my sense of smell for the same reason.

“I was bed-bound for a month after leaving the hospital and was no longer the strong, capable man I knew myself to be before this.”

Despite everything, Jared was determined to get his strength back for his wife and girls.

He said: “I’ll never forget how happy I was to find out I’d built enough strength to pick up the lightest of my three daughters.

“I picked up the next lightest a few days later. Finally, I could pick up all of my daughters. It felt like a piece of my heart was restored.

a 17-stone bodybuilder, rapidly lost his weight and ability to speak due to hemophagocytic lymphohistiocytosis (HLH). Despite organ failure and delirium, his fitness saved him during five weeks on life support, enabling his remarkable recovery.
Jared after recovery with his two oldest daughters. (Picture: Jam Press)

“I feel strong again now. I’ve grieved my losses with the help of a mental health professional, which has allowed me to devote my energy to walking this new recovery path.

“I’m currently free from HLH and am monitored by my doctors. I will also be returning to powerlifting competitions in a few weeks.

“I feel like me again, even though I have some new scars and mementoes to remind me of where I’ve been.

“I’m still facing some aftermath from the HLH, like breathing issues and lasting kidney damage.

“I also have to be cautious about exposure to germs and overworking myself, because I can get sick more easily and to a greater extent than before. But I’m reclaiming my identity of being strong and resilient.”

Jared shares his journey on his Instagram page (@‌jared.rebuild_stronger), in hopes of inspiring others.

a 17-stone bodybuilder, rapidly lost his weight and ability to speak due to hemophagocytic lymphohistiocytosis (HLH). Despite organ failure and delirium, his fitness saved him during five weeks on life support, enabling his remarkable recovery.
Jared now after recovery. (Picture: Jam Press)

He added: “I’ve faced death down and lived to tell the tale. It’s certainly given me more perspective on what matters and what doesn’t in life.

“I wish people knew that building muscle, strength, and physical resilience is the best life insurance policy you’ll ever take out.

“It’s too easy to put yourself last on your list of priorities between work, school, kids and other obligations. We all think we have time to get our act together until we don’t. I found that out the hard way.

“That means we need to care for our bodies and live intentionally.”

READ MORE: ‘I’m an allergy doctor – this is why I’d NEVER pierce my young children’s ears and ban SHOES’

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