I lost 40lbs and the ability to speak after my body started eating itself – bodybuilder reveals horror of rare disease
A BODYBUILDER who plummeted 42 pounds 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.
Jared Maynard via Jam PressJared Maynard’s weight plummeted 42 pounds in five weeks as he unknowingly developed a deadly disease[/caption]
Jared Maynard via Jam PressJared Maynard was diagnosed with hemophagocytic lymphohistiocytosis in early 2023[/caption]
Jared Maynard via Jam PressMaynard recalled how his physique substantially dropped after he was admitted to the hospital[/caption]
Jared Maynard via Jam PressAt one point, Jared Maynard said he lost the ability to speak[/caption]
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.
But after five weeks on life support and a miracle turnaround, Maynard did recover.
“During those weeks on life support, I was too ill to receive much nutrition through the feeding tube that was inserted,” he said.
“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 and woke up in the ICU weighing about 150 pounds.
“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.”
Maynard, his wife Ashley, 32, and their three daughters Elizabeth, 6, Mary-Claire, 6, and Cecilia, 3, all came down with a cold last January.
After a week, Maynard’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, Maynard 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, Maynard 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.
What is hemophagocytic lymphohistiocytosis (HLH)?
Hemophagocytic lymphohistiocytosis (HLH) is a rare disease that usually occurs in infants and young children but may occur in adults, according to John Hopkins Medicine.
In some instances, children usually inherit the disease, while adults may contract the disease through infections and cancers.
HLH leads to irregularities in one’s immune system, causing white blood cells to attack your own blood cells.
There are two types of HLH: familial and acquired.
Familial HLH accounts for about 25 percent of cases, and families pass down the condition.
Acquired HLH consists of viral infections, especially Epstein-Barr virus, or a weak or diseased immune system, according to John Hopkins Medicine.
What are the symptoms of HLH?
Fever and enlargement of the spleen are the most common symptoms of HLH.
Other symptoms may include an enlarged liver, swollen lymph nodes, skin rashes, jaundice (yellow coloring in the skin and eyes), lung problems (including coughing and difficulty breathing), digestive issues (including stomachache, vomiting, and diarrhea), and nervous system problems (including headache, trouble walking, visual disturbances, and weakness).
Young children and infants may have additional symptoms, such as irritability and problems with their growth and development.
In Maynard’s case, it was a response to the mononucleosis infection caused by the Epstein-Barr virus.
“My liver and kidneys were failing, along with other organs. I had to be sedated, ventilated, and put on dialysis,” Maynard, a physiotherapist, strength coach, and entrepreneur from Ontario, Canada, said.
“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.”
Maynard’s health rapidly declined.
“The treatment for HLH is a protocol involving chemotherapy, among other things, but I was too sick to receive the full dose,” he said.
“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.”
Maynard 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.
Maynard’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.
‘I FEEL LIKE MYSELF AGAIN’
After almost four months in the hospital, he was finally allowed to return home in May 2023.
“I was in constant pain for months during and after my hospital stay,” Maynard said.
“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, Maynard was determined to get his strength back for his wife and girls.
“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,” he said.
“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.
“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 mementos 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.”
Maynard shares his journey on his Instagram page in hopes of inspiring others.
“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,” he added.
“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.”
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