After Years of Pain, a Sense of Purpose
It started as a spot on his leg.
It was 1964, and 22-year-old John Latella was in the Navy serving on a ship when he noticed the spot. He went to the sick bay; the doctor had no idea what it was and ordered a biopsy. Three months later, John was diagnosed with psoriasis.
He was not told how to treat or mitigate the condition or, really, given any sense of what to do. Once he got back to shore, he went to a naval hospital and was given a salve.
“They said, ‘Don’t wear it with whites,’” he laughs, pointing out that his Naval uniform was white. “And they said, ‘Don’t wear it to bed; it’ll ruin your sheets.’ So it was very difficult in the beginning.”
A slew of symptoms—and diagnoses
It didn’t get easier for a long time. Over the following five decades, John would face a number of new comorbidities and diagnoses that carried their own challenges, including prostate cancer and ankylosing spondylitis. Meanwhile, his psoriasis worsened. “It just seemed to spread throughout my body [during the 1970s],” John says. “One doctor said it was genetic; other doctors said it was environmental. Another doctor says, ‘It must be something you’re eating.’ It seemed that nobody really knew what it was.”
At one point, he estimates 85% of his skin was affected by psoriasis plaques. He recounts wearing a polyester suit once at a conference. “Every time I walked, there would be scales across the floor. By the time it was done, the whole floor was white around me because the polyester would rub against the psoriatic scales and take the tips off,” he says.
Another time in the 1970s, he was asked to leave a public swimming pool because people feared his condition was contagious. He never went to a public pool again.
Outside of the discomfort of other people’s stares and rude remarks, John was in pain. He was finding it hard to move and complete basic activities. In 1976, he was diagnosed with psoriatic arthritis, a form of inflammatory arthritis that can affect people with psoriasis.
“They said that I had cervical spondylitis and ankylosing spondylitis,” he says. “Well, of course, I had to ask the doctor what they were. There was no Internet at the time.”
His vertebrae, L3 through L5, had become fused together. His movement was limited, and he was warned to be careful. He began treating the back spasms with a chiropractor before a rheumatologist warned him to stop because it was dangerous for his condition.
For years, he relied on aspirin to manage his pain, but he needed something stronger. He eventually had lumbar surgery in 2020.
“I found out later through physical therapy that exercise was very important,” he says. “The key word was movement, movement, movement. If you didn’t move, you got tight.”
In 1995 and 1996, he tried the ultraviolet radiation treatment PUVA, a combination of psoralen (P) and long-wave ultraviolet radiation (UVA), used to treat psoriasis and other skin diseases. While he says it works for many people, it wasn’t successful for him. Years later, doctors found signs of skin cancer that needed to be treated, which continues to this day.
“Now my skin has these dots all over it—the skin has died underneath,” he says. “My grandson said, ‘Grandpa, if I connect those dots, will it make anything?’”
Finding a community, finding answers
In 1984, John became involved with the National Psoriasis Foundation. In 2004, at a conference, he learned about a promising biologic, but the Food and Drug Administration hadn’t approved it. In 2005, it finally got approval, and the biologic medicine cleared up almost all of his scaling in 45 days. His doctor called it a miracle.
As John continued to educate himself about his conditions, he also began to educate others.
“I used to get calls from people saying, ‘Hey, this guy I know has got psoriasis; can you talk to him?’ ‘Sure, have him call me,’” says John. “I’d give him some simple information. I said the best information comes from a dermatologist. I can’t recommend medication, because I’m not medically certified to do that. But [talking] would help people over the trauma.”
The National Psoriasis Foundation began a mentoring program, and now John has mentees in India, Australia, South Africa, and elsewhere.
“Just to help them through the beginning part of dealing with psoriasis and what it is and to trust their dermatologist,” he says. “You can get worse. It could lead to psoriatic arthritis. It could lead to other comorbidities like depression, diabetes, etc.”
John is now educating himself on his latest diagnosis: Parkinson’s disease.
While John was doing physical and occupational therapy following lumbar surgery and later a procedure to insert a pacemaker, his therapist noticed he had symptoms of Parkinson’s.
“I said, ‘I don’t have tremors,’ because the only thing I knew about Parkinson’s was from Michael J. Fox on television,” John says. “But he said, ‘No, there are other symptoms.’”
When John walks, he doesn’t move his arms. Sometimes, his feet seem to be stuck to the floor when he wants to move. His writing is very small, and his sense of balance suffers.
John was given a handbook on Parkinson’s disease, and the diagnosis became clearer.
“I read through it and had all of these factors. I thought it was all part of psoriatic arthritis and had no idea it was part of something else,” shares John. “I’ll tell you, some of the symptoms, at times, I can’t tell the difference, but I know the pain is there.”
And John knows pain. Psoriasis burns. Psoriatic arthritis pain is a sharp, intermittent pain that sometimes goes for longer. After back surgery, if he laid down flat without his legs elevated, he was in terrible pain.
John chooses not to take opioids as pain management. He instead relies on over-the-counter pain relievers and mindfulness. “One of the ways that I have tried to mitigate the pain is through meditation,” he says. “I try to do this daily after breakfast. I’ll sit quietly for a period of time and meditate and try to center myself and do what I need to do that day.”
Living through the pain
At 79, John fills his days. He and his wife of 57 years, Vivian, go to the gym, and he is on multiple committees and boards for medical research. He is a grandfather, and he’s active with his mentees, organizations, and public speaking.
His wife’s care has been key: “My sole support for many years has been my wife,” John says. “She’s been through hell. It wasn’t easy to be intimate with psoriasis all over your body. Not easy at all. She’s been a trooper.”
And he’s found a passion in woodworking.
John lights up when he talks about the hobby, which he picked up in 1996 while dealing with prostate cancer and trying to stave off boredom. “I was getting nasty because I was going to be out of work for six weeks,” he says. “I was well enough to walk around; every morning I’d take a mile walk and afterwards, I’d sit. When you sit, you get bored. So I started looking at (woodworking) plans.”
First he made a dump truck—the hood opened, and the motor nestled inside. Then a trailer with a carrier. Next, a backhoe and a front-end loader. He went online and started buying plans and building. He’s now built more than 70 different, intricate miniature models.
“[Woodworking] just lets you kind of lose yourself,” he says. “It’s kind of like meditation.”