The TV host and fashion journalist hopes sharing her story will encourage others to do the same and help change misconceptions about people living with psoriasis.
About 10 years ago, TV host and fashion journalist Louise Roe was working at a fashion magazine in London when she started experiencing psoriasis symptoms — painful, itchy, red, scaly patches on her body.
“I felt super stressed out from my job… it took a toll on my body. While it was incredibly uncomfortable physically, I did not like to look at it either,” Roe told Healthline.
After seeing a doctor, Roe, who was 25 years old at the time, was diagnosed with plaque psoriasis, an immune-mediated disease.
“Being in the fashion industry, I think I was more conscious of how I looked and represented myself. I was at an impressionable age too, and being a young woman living in London [made it hard]. It wasn’t a fun time at all,” she said.
After managing her symptoms for over a decade, Roe decided to speak publicly for the first time about having the condition in hopes of helping others.
“What struck a chord with me about this particular campaign is the idea of inside perspective, [which] refers to the fact that psoriasis starts in the body and is a genetic condition rather than something that’s just topical,” said Roe.
“For me it resonates on a deeper level and is something that is metaphorical for how psoriasis can really strip away at your confidence and self-esteem.”
To get the word out, and in collaboration with Celgene Corporation, she recently launched the Inside Perspective campaign.
She added, “It was a real journey to get my confidence back and not feel frustrated all the time at having this condition. I learned to live with it and not let it take over and make me feel negative.”
While the National Psoriasis Foundation reports that 7.5 million people in the United States live with psoriasis, Dr. Gary Goldenberg, assistant clinical professor of dermatology and pathology at The Icahn Sinai School of Medicine at Mount Sinai Hospital in New York City, says many people don’t understand the condition and incorrectly believe it’s contagious or a rash that is contracted from another person.
Because of these misconceptions, people with psoriasis tend to hide their condition.
Roe knows this all too well.
She recalled a time when she was in Greece filming an episode of MTV’s “Plain Jane” and a scene required her to get out of a car. As she exited the car, the knee-length dress she was wearing flew up and exposed a psoriasis flare on her thighs. A colleague spotted the patches and was taken back.
“People don’t mean to be mean, but there are moments like that,” Roe said.
“Ironically, my role on the show was to give young women confidence by spending a week with them and making them feel better inside and out. I had to carry on the scene where I’m telling a woman, ‘Come on, you have to be confident’ yet I didn’t feel confident about myself.”
Dr. Goldenberg said many of his patients struggle with similar issues.
“What people don’t understand is that it’s not a condition that comes from the outside to the inside, it’s the other way around. It’s something that’s internal and inflammation inside the body that’s causing psoriasis on the skin,” Goldenberg told Healthline.
“We have lots of data that clearly shows the majority of patients who have moderate to severe psoriasis are either untreated or undertreated, meaning they’re not getting the most effective treatment for their particular condition.”
He added, “By raising awareness, [we] can change a lot of lives of those who are suffering not only on the outside but the inside; it’s not just a physical stress, but a very big emotional stress.”
Goldenberg also pointed out that many studies show people with psoriasis struggle with quality of life.
“Some studies show that only heart disease and diabetes are worse for quality of life,” he said.
“Patients talk about burning, itching, and constant stress of not knowing… where they’ll find their psoriasis next. That psycho-social aspect of the condition is so important to [address].”
The good news, he notes, is that treatments, such as topical creams and lotions, phototherapy, biologic injections, and medications, can help by decreasing inflammation.
In addition to treatment, he also encourages a holistic approach that includes caring for your skin, managing stress levels, and incorporating proper diet.
“Not every treatment is right for every patient. It’s about working with your dermatologist and finding the right solution for you,” Goldenberg said.
Roe agrees, and she hopes that sharing her story will encourage others to seek the best treatment possible.
“I’ve had to pull over my car and stop driving before because [my symptoms] were so uncomfortable. If you’re living with the condition, then it’s possible you’re having the same symptoms no matter where you are living or who you are or what your situation is,” said Roe.
“I want to open the door to meaningful conversation with anyone living with psoriasis.”
Article originally appeared on October 29, 2018 on Bezzy’s sister site, Healthline.
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