Home Musician Epstein-Barr derails NJ man’s life; he pushes for better care

Epstein-Barr derails NJ man’s life; he pushes for better care

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James Strazza lay in the darkness of his home in South Carolina, his eyes obscured, the room quiet. He has been living like this for two years, stuck in his personal prison.

The only light comes from a lamp under the bed, there for her mother to navigate in the dark. Strazza, who grew up in North Jersey, suffers from a severe form of chronic fatigue syndrome which leaves him exhausted and prone to excruciating pain at the slightest stimuli – light, sound and touch are all anxiety.

His mother Galen Warden, a Montclair native who now cares for her son in Beaufort, South Carolina, is candid about his condition.

“My fundamental job is to keep him from killing himself,” she said.

Strazza, 33, who had a promising music career, said he didn’t want to die. But he wants to stop “living like that”.

“It took everything from me, everything I love to do, every passion, every pleasure, all the little things we take for granted every day,” he said. “I lost my identity, I lost my freedom. I lost my independence in almost every way you can imagine.”

‘He took it all’: A Q&A with James Strazza on living with chronic fatigue syndrome

An estimated 15 to 30 million people worldwide suffer from myalgic encephalomyelitis, also known as chronic fatigue syndrome, a complex and often debilitating condition thought to be triggered by an infection, according to the network # ME Action. Researchers and advocates say the disorder is misunderstood in the medical community, often leading to misdiagnoses and poor treatment for patients.

Strazza, a former Rockaway resident, can barely relate to the outside world, but he and his mother recently took to social media to raise awareness about the plight of people with ME/CFS. Strazza says he wouldn’t be confined to his bed, limbs too heavy to lift and waiting for waves of pain, if the condition was taught in medical schools or if doctors better understood his symptoms when they first appeared for the first time.

something was wrong

It was 2008 when the budding studio musician and producer sensed something was wrong. Strazza was dealing with her third episode of Epstein-Barr, a virus that causes mononucleosis and which some scientists have linked to ME/CFS.

The virus triggered pain and fatigue that never abated. Strazza couldn’t carry his amps to a gig without help. Then he couldn’t pick up his guitar. He canceled recording sessions, too tired to perform, his mother said.

“It’s like a frog falling into cold water and you gradually increase the heat. At first these things didn’t raise huge alarms,” Warden, 64, said. “There was nothing there that talked about it, so we had no references of any kind. We kept telling him to shake. You can do it. Exercise more.”

It was the New Jersey council the doctors gave to the family. This turned out to be bad advice. Trying to persevere makes it worse, said Ronald Davis, who directs Stanford University’s Genome Technology Center.

Proper care for ME/CFS “should be taught in medical school. It’s just getting started,” Davis said.

The disease is often mistreated because it can involve an array of symptoms that defy simple categorization, said Brayden Yellman of the Bateman Horne Center in Salt Lake City, who specializes in the treatment of ME/CFS and related conditions. In nine years of his medical training, ME/CFS has not appeared once, he said.

“As far as medical practice goes, things have become very fragmented and everyone has their specialties,” Yellman said. “You go to primary care and they tell you what’s wrong and then they send you to the sub-specialist you need based on the symptoms you have.”

Patients with complex conditions get lost in the shuffle. “This is a disease that has been ignored for decades by the medical establishment,” added Rob Sklans of Metuchen, board member of #MEAction. “Not only is it statistically invisible because there is no diagnostic code, but there is no confirmed diagnostic test.”

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Chronic fatigue carer urges people to listen to those in pain

Galen Warden cares for his son, James, who suffers from a debilitating form of chronic fatigue syndrome. She has advice for others in her position.

Richard Burkhart, NorthJersey.com

disastrous advice

The more Strazza tried to pass, the worse he got.

“That’s what got him into bed,” his mother said. “This is where awareness is absolutely key.”

“It could be looking at something or scrolling through a text or listening to a person talking in the room – the cognitive input hurts his brain,” she added. “Imagine someone claps their hands and the sound causes you a sharp pain. Now imagine that sound and pain repeating and repeating for about 10 minutes. When it’s bad, you can’t touch it .”

Warden and her son moved to South Carolina six years ago to be near a sick relative. These days, Strazza’s condition is grim.

The former musician can no longer listen to music, finding the pain unbearable. He spends most of his days in the dark, noise canceling headphones helping to ward off the world. His mother walks quietly on tiptoe around the house. Strazza plays the violin on her phone, one of her few connections to the outside world, though it can lead to overwhelming “brain pain.”

“I haven’t seen the sun for two and a half years,” he said. “I haven’t listened to music in a year and it’s just overwhelming. It’s one of the hardest things about it. It’s worse than the pain.”

He takes dozens of pills to try to manage the disease, but there is no known cure for ME/CFS. Some medications, such as the antipsychotic Abilify, seem to help patients at low doses. Others are testing experimental treatments like spinal cord sectioning.

“If anyone is feeling lonely, I think it’s important for them to know that there are millions of people just like him navigating the same thing,” said Laurie Jones, CEO of #MEAction, based in Santa Monica. can join so patients can share their experiences and say what works for them. It’s not the way you want to do medicine, but it’s a start.”

Strazza said he hopes sharing stories like his will lead to proper training for doctors and more funding for research, not to mention better health insurance coverage for chronic conditions like ME. SFC. He and his mother spend $1,500 on medications and supplements each month. Government benefits help them, but force them to use their savings, he said.

He finds some relief in writing poetry. He will compose a sonnet and text it to his mother, who will respond with praise and criticism.

Finding beauty in one’s life is difficult, he says. “You kind of have to create it for yourself. That’s what I do. I try to bring beauty out of the darkness.”

More information and resources are available through the #MEAction network at www.meaction.net.

Richard Burkhart of the Savannah Morning News contributed to this story.

Gene Myers is a reporter for NorthJersey.com. For unlimited access to the most important news from your local community, please subscribe or activate your digital account today.

Email: [email protected]

Twitter: @myersgene