Psoriasis: The story of a hidden condition

More than 125 million people worldwide live with psoriasis, a chronic autoimmune disease that causes red, scaly patches to appear on the skin.

Mar 19, 2015
Helen Hanrahan
Helen Hanrahan, creator of The Flaky Fashionista

Helen Hanrahan created her fashion blog, The Flaky Fashionista, for fellow psoriasis patients after being invited to a black-tie event. Needing something other than the conventional backless, strapless dress, she went online to look only to realize there was nothing suitable and no real advice for anyone with a skin condition on what they could wear either. The experience reinforced Hanrahan’s determination to write for an audience who, like her, refused to be defeated by their condition.

Psoriasis is a chronic autoimmune disease that causes red, scaly patches to appear on the skin. More than 125 million people worldwide live with the condition, a painful and irritating disorder that can reduce those who have it to years of inflammation and severe discomfort as well as social and psychological problems. Despite its vivid appearance, psoriasis is often invisible because patients frequently cover it up, not wanting to draw attention to themselves or their skin.

“I won’t be defined by my psoriasis,” said Hanrahan. “But every family holiday over the past 15 years has been dictated by whether I could find a balcony high enough to sunbathe on without being seen. I won’t get into a swimming pool or the sea because I’m shy about exposing it – you don’t want people staring at you.”

Lack of understanding

Many people do not understand psoriasis well. Some even think it’s contagious. Skin cells in psoriasis patients mature about five times faster than cells in normal skin, and these cells pile up on the skin’s surface before breaking off, causing potentially severe irritation and inflammation. Science has finally led to a better understanding of the condition, unleashing the potential for new treatments. But for many patients, the experience of psoriasis has been one of managing symptoms, living with its restrictions and trying to get by as best they can.

The Novartis Skin Impressions campaign is intended to show what it means to live with a chronic skin condition such as psoriasis and to help, inspire and motivate people to rediscover their confidence and strive for a skin they can truly live in.

Melissa, 22, a professional dancer and ballerina who lives and works in New York, has had psoriasis since infancy.

Although psoriasis has had a painful impact on her life, she views the condition as just a small part of who she is.

“By the time I was 3, over 90% of my body was covered in patches,” Melissa said. “I’ve had lots of difficulties with partners who didn’t want to dance with me because of it. I became a better dancer so that everybody wanted to dance with me, no matter what my skin looked like.”

Melissa, professional dancer and ballerina
Melissa, professional dancer and ballerina

Melissa used to dread spring and summer because it is harder to cover up with long sleeves and trousers than it is during the winter.

Hanrahan agreed: “I created my fashion blog precisely because there was nothing there for people like me trying to live with psoriasis.

“I wanted to go out but needed the right clothes. Many people with psoriasis just stay in, so it’s no wonder they end up feeling depressed, humiliated and reduced by their condition. I was determined to do something upbeat and positive about it.”

Risk of depression and anxiety

Up to 30% of people with psoriasis are diagnosed with psoriatic arthritis, a specific form of arthritis that is particularly painful and debilitating and can lead to joint damage. People with moderate-to-severe psoriasis also experience higher rates of depression and anxiety, dying, on average, four years younger than people without the condition.

The bad news is there is no cure and existing treatments do not completely clear up the skin. Many dermatologists and skin experts think the ‘ideal’ is to have skin that is about 70% clear of patches – but for sufferers that is not enough.

Research, however, is ongoing and more effective treatments are on the horizon.

For Hanrahan, such a day cannot come soon enough. And she rejects the view that she has to accept she must just cope with her condition.

”My aim has always been 100% clear skin, there’s no question that I’m looking for anything less than that,” she said. “I’ve always believed I will be cured.”