At the age of 17, Andrew Gosse noticed a small silvery scab on his left elbow.
“I went to my family doctor, and he said it was psoriasis,” said Mr. Gosse. “I didn’t know what that was. I just wanted a cream to make it go away, but he said no, it’s chronic. I didn’t understand that meant I would have it forever.”
At first, he thought, “One little scab, who cares?”
But over the next year, he says it “ravaged” everything. It grew so thick on his scalp, he could stab himself in the head with a fork and not feel it.
“It would crack and ooze and itch unbelievably,” he said. “I lost my fingernails, my toenails. It was inside my nose and eyelids, on my face, torso and below the waist. That was my existence for 25 years.”
Topical treatments did nothing.
And like many individuals with severe psoriasis, Mr. Gosse did what he could to hide it, putting band-aids on his fingers, wearing long-sleeve shirts year-round and keeping his hair long.
“Because it’s such a visible disease and looks infectious, people recoil from you, or don’t want to touch you,” he said. “It makes dating and intimacy impossible. It takes you away from participating in life.”
Multiple approaches
He says he was in a very dark place when Dr. Wayne Gulliver, his dermatologist and a professor in the Faculty of Medicine at Memorial, approached him about participating in clinical trials.
“It wasn’t altruistic on my part,” said Mr. Gosse. “It was desperation. But every time you try something, and it doesn’t work, it crushes you and takes away hope. It gets harder to hope the second time, and the third.”
In the years to follow, he participated in nine clinical trials.
They tried pills, topicals and lights. One pill made everything burn. Another pill made him really angry.
Then came the biologics.
Unlike medications that focus on treating the symptoms, biologic therapies target the underlying genetics behind the disease.
In 2009, Dr. Gulliver approached Mr. Gosse with a promising new treatment.
In four months, he went from being covered with psoriasis to completely clear for the first time in his adult life.
“There’s nothing I can offer in words to relay what that experience was like,” said Mr. Gosse. “I now get injected once every 12 weeks and my symptoms are 100 per cent under control. There have been no side effects, no increases in treatment frequency or dosage amounts and no reduction in efficacy in 16 years. It’s as close to a cure as it can be, without actually being a cure.”
A chance meeting
What began for Dr. Gulliver as a chance meeting at a 1990 dermatology conference sparked a 30-year genetic treasure hunt.
He and Dr. Eugene Farber, the former chief of the Psoriasis Research Institute at Stanford University, started looking for the psoriasis gene.
They found it — two of them, and now there are over 100 identified.
The researchers’ first co-authored paper, published in 1999, detailed a unique study of samples from Newfoundland and Labrador families with both affected and unaffected members.
“We enrolled 1,200 people,” Dr. Gulliver said. “Back then, we had 327 genetic markers. Recently, we did the same study with 800,000 genetic markers. That will tell you how the technology has changed.”
Ideal population
Psoriasis is far more than just a skin condition.
As in Mr. Gosse’s experience, it can also have an impact on the physical, psychological and social well-being of patients and can cause irreversible damage throughout their lives.
It’s also associated with a lot of underlying conditions, such as high blood pressure, diabetes, heart disease, high cholesterol, obesity, arthritis and Crohn’s disease.
“I’m very thankful to patients like Andrew who have helped me. Without them, none of this would be possible.”
The chronic autoimmune skin disorder affects up to six per cent of the province’s population.
High local prevalence and familial clustering makes Newfoundlanders and Labradorians the ideal population for studying the genetics behind the disease.
“When you find a disease that runs in families, you study the families,” said Dr. Gulliver. “We looked at the genetic markers and, lo and behold, these markers turned out to be targets for the treatment of psoriasis.
“This is the quintessential model for diseases that run in families,” he added.
Landmark contributions
Dr. Gulliver’s research has made landmark contributions to our understanding of psoriasis, as genetic mapping quickly turned into practical breakthroughs.
“We discovered there was a drug already on the market for Crohn’s disease that targeted the psoriasis gene,” he said. “Genetic markers could also tell us who was going to respond to a treatment and how well they would respond. So, they could get very precise therapies. We went from 30 per cent of patients getting 75 per cent better, to 60 per cent getting 100 per cent better.”
His newest paper, published recently in Nature, is an international collaboration and includes two other Newfoundland and Labrador researchers, Dr. Proton Rahman, also with the Faculty of Medicine, and Susanne Gulliver of Newlab Clinical Research Inc., Dr. Gulliver’s research company.
“[Dr. Gulliver’s] given my wife back her husband. He’s given my children back their father.”
It reveals 109 gene associations, 45 of which have been newly discovered.
“Even though we have very effective targets now, some of these new genes may prove to be very effective targets, as well,” he said. “Our discoveries may also be translated to other diseases where, if they can find related genes, there may already be drugs on the market that target those genes, which could save years of development and billions of dollars.”
In particular, he believes the data they’ve collected can be used to find genes for some of the disorders related to psoriasis, including psoriatic arthritis, diabetes, heart disease, obesity and Crohn’s disease.
Dr. Gulliver is deeply grateful to the Newfoundland and Labrador families who have worked with him over the years and for their contributions.
“I’m very thankful to patients like Andrew who have helped me. Without them, none of this would be possible. They have significantly contributed to the advancement of psoriasis understanding and to us moving it forward so rapidly. Now they are benefitting from it.”
Even after 30 years, Dr. Gulliver says the work is far from over.
“I’m still going through all the data, looking at the genes and we keep making discoveries. This is something that will be producing findings for many years to come.”
Mr. Gosse has since stepped out of his self-imposed shadows to become an advocate for people with psoriasis and participated in a short documentary about his experience with the disease.
“Because of Dr. Gulliver’s research, he’s given my parents back their son,” said Mr. Gosse. “He’s given my wife back her husband. He’s given my children back their father. I’m alive because of the research that he’s done.”