Benjamin Brighton is struggling to recover from a rare transverse myelitis

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SOMERSWORTH — A 42-year-old Seacoast man is recovering at home from a rare spinal condition that left him temporarily unable to walk and could keep him unemployed for months, if not longer.

Benjamin Brighton, a graduate of Portsmouth High School and the University of New Hampshire, said he still struggles to walk without a cane or walker and is dealing with “a combination of severe pain and simultaneous numbness.”

“To be honest, when I stand up I look like a baby giraffe,” Brighton said in an interview last week. “It’s fair to say I won’t be running a marathon anytime soon, and going up a flight of stairs is like climbing Mount Everest.”

Doctors at Portsmouth Regional Hospital, where he was admitted and treated for three weeks, diagnosed Brighton with transverse myelitis, a rare swelling of the spinal cord.

Not only is Brighton struggling to walk as he’s still working to gain control of his leg muscles, but he’s also unable to urinate on his own due to spinal cord swelling.

The medical staff had to insert a urinary catheter.

“The urologist also clarified that my ability (to urinate) will come back in a few weeks, come back in a few years, or maybe never come back,” he said. “Perhaps there will never be complete normalcy.”

Brighton’s ex-wife Kate Brighton started an online fundraising page to help him raise money to pay for his living expenses, healthcare costs and adjustments to his Somersworth home that were needed due to his limited mobility, she said.

Benjamin Brighton, who is recovering from a rare spinal condition, uses a cane to walk around his Somersworth home.

Although the two are no longer married, they remain close friends and she has been helping him since he was released from the hospital about two weeks ago.

“Some of the work will be simple, like remodeling the home into a one-story layout. The house requires a small ramp from the driveway to the deck and handrails in the bathroom. And of course, unexpected things will come up,” she said. “Some of the work is larger, such as heating system repairs or replacements, roof repairs and plumbing repairs.”

Possible link to vaccine questioned but no answers

Brighton, a property surveyor, said symptoms began on December 28, about five days after he received Johnson & Johnson’s COVID-19 vaccine.

When asked if he thinks the vaccine caused the disorder, Brighton said: “Who knows? It could be. Certainly the timing is really suspicious. I only had the shot for a few days before I started getting the symptoms.”

Brighton stressed that none of his doctors had told him the vaccine caused the disorder and that nothing in his medical records made that connection.

Public health officials are urging everyone aged 5 and over to get vaccinated against COVID-19, citing highly effective protection against the spread of the coronavirus and even in breakthrough cases, from deaths and hospitalizations.

But some COVID vaccines may be better than others. Because of a rare blood-clotting disorder that may be linked to the J&J vaccine, the US Centers for Disease Control and Prevention recommended in December that people take either the Pfizer-BioNTech or the Moderna COVID-19 vaccine instead of the J&J vaccine.

Brighton said his doctors had not given an opinion on what caused him to suffer from transverse myelitis.

What is transverse myelitis?

Johns Hopkins Medicine states that transverse myelitis is a condition caused by inflammation of the spinal cord.

“It is characterized by symptoms and signs of neurological dysfunction in motor and sensory pathways on both sides of the spinal cord. The involvement of motor and sensory control pathways often results in altered sensations, weakness, and sometimes urinary or bowel dysfunction.”

From left, Kate Brighton and Benjamin Brighton talk at his Somersworth home.

The cause of 60% of cases “may remain unknown,” while “40% are linked to autoimmune diseases such as multiple sclerosis,” according to John Hopkins.

Laura Montenegro, public information officer for the New Hampshire Department of Health and Human Services, acknowledged that the European Medicines Agency has listed transverse myelitis as a possible safety risk for the Johnson & Johnson vaccine.

“This was based on 11 possible/probable global cases out of an estimated 33 million doses administered by Janssen (Johnson & Johnson),” she said recently in response to questions.

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Based on U.S. reports, the Food and Drug Administration and CDC have not identified transverse myelitis as a possible side effect of the vaccine, “but safety data continues to be reported and reviewed,” Montenegro said.

She pointed to the CDC’s “preferred recommendation” calling for “administering the Pfizer-BioNTech or Moderna-COVID-19 vaccines in place of the Janssen vaccine because of associations between the Janssen vaccine and the rare occurrence.” of thrombosis with thrombocytopenic syndrome and Guillain-Barre syndrome.”

In October, the European Medicines Agency recommended putting transverse myelitis on the label as a side effect of the J&J vaccine.

This prompted the company to issue a statement at the time confirming that “rare cases of transverse myelitis have been reported following vaccination with Johnson & Johnson’s COVID-19 vaccine.”

The company added that “although the likelihood of these diseases occurring is very low, the product information for the COVID-19 vaccine … will be updated to include important information about the signs and symptoms of transverse myelitis.”

Benjamin Brighton uses a cane to walk around his Somersworth home.

Portsmouth doctors declare disorder

Doctors at Portsmouth Regional Hospital, who emphasized they were talking about transverse myelitis in general and not Brighton’s case, said the neurological disorder is rare.

according to dr Matthew Robertson, a neurologist at the hospital, there are typically only three cases per 100,000 people in the general population, and the severity of cases can cover “a wide spectrum”.

“It can range from temporary tingling and weakness to some kind of full-blown paralysis,” Robertson said, including “paralysis of the arms and legs and significant blood pressure problems.”

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Doctors have noticed an increase in transverse myelitis cases in people diagnosed with COVID-19 during the pandemic, Robertson said.

When asked if he thinks transverse myelitis could be caused by taking the Johnson & Johnson vaccine, he said: “I think it’s very unlikely, but I don’t think you can absolutely say it exists a chance.”

But the rates for people diagnosed with transverse myelitis are “significantly higher” in people who have had COVID than in people who have COVID vaccines, he said.

“I would still take the vaccine rather than dice with COVID,” he added.

Brighton said he has not been diagnosed with COVID-19.

dr Portsmouth Regional Hospital chief medical officer Thomas Wold stressed that doctors are being put on high alert as transverse myelitis has been identified as a potential side effect of the vaccine.

That way, he said, providers should “detect and treat the disorder quickly” if someone develops symptoms.

Noting that millions of Johnson & Johnson doses have been administered with no problems, Wold added, “I still think it’s safe.”

Benjamin Brighton pets his dogs Maggie and Yukon at his Somersworth home.

A scar on your spine

Robertson said the long-term prognosis for people diagnosed with transverse myelitis “really depends on the severity of the case.”

“The deeper you dive in terms of severity (with) weakness or associated symptoms, the harder it is to come back to the surface or get back to normal,” he said.

Some people fully recover from their symptoms, he said. “There are also people who end up with a certain weakness,” he added.

He described it as “kind of a scar on her spine.”

However, he emphasized that the disorder is rare.

Brighton initially thought the disorder could have been caused by head injuries he sustained during an incident in March 2021, but doctors ruled that out, he said.

Johnson & Johnson issued a statement in response to questions from Seacoast Media Group.

In it, the company said, “There is no greater priority than the safety and well-being of the people we serve, and we carefully review reports of adverse events in individuals receiving our medicines or vaccines.”

“Breath me new life”

Brighton said he remains optimistic although he doesn’t yet know his long-term outlook.

Despite excruciating pain from spinal swelling, Brighton said: “I literally just went through the physical ordeal, I was never scared, I was never scared, I just landed on acceptance.”

Brighton described himself as “a normal 42-year-old, overweight and out of shape but normal” before symptoms started.

Five days later he was unable to walk, in severe pain, unable to urinate and suffering from “whole body cramps” before being rushed to Portsmouth Regional Hospital, where he stayed for three weeks.

But he’s still optimistic.

“It breathes new life into me,” he said.

Brighton have only recently started working from home but because he still has trouble controlling his legs he can only walk short distances and he cannot drive.

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He recently had a friend drive him to two property appraisals.

“I just get really tired, really quickly when I’m doing something,” he said.

Brighton appreciates those in the community who have donated or will donate to its fundraiser.

But for those who can’t, he hopes friends will drop by or text him when they have a few free minutes.

“Just come over and knock on the back door, I’m not going anywhere,” he said, laughing. “It would be nice to have company once in a while.”

Kate Brighton said she was “super happy and super proud” of the way her ex-husband has responded to the ordeal, both physically and emotionally.

“This is the kind of situation that could have knocked anyone down. It would be hard for me to remain optimistic after what he’s been through,” she said. “He’s like a completely different person now. He took that near-death experience and used it as a second chance at life.”

Fundraiser: gofundme.com/f/lets-help-ben-get-his-legs-back

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