Zoe on a mission to end shame and stigma of psoriasis

(Above) Zoe Ryan.

A young midlands woman who was officially diagnosed with psoriasis when she was 18 years old has made it her mission in life to end the shame and stigma surrounding the skin condition.

So passionate is 25-year old Zoe Ryan from Tullamore about her mission that she founded a psoriasis awareness platform “Itching To Tell You” and she also features in a new documentary-style film which was released this week recounting her own experience of living with psoriasis and looking at the hope that science offers for better treatments and perhaps a cure for the skin condition.

Psoriasis is a long-term chronic skin disease that causes red, itchy scaly patches, most commonly on the knees, elbows, trunk and scalp. Over 73,000 Irish people suffer with the condition, approximately 9,000 of whom have severe psoriasis, and there is currently no cure for the disease.

Zoe Ryan, who works as a journalist in the RTE Sports Department, has suffered with skin conditions for most of her life but it was only when she was completing her thesis while studying for a Masters in Radio & TV Broadcast Production that she decided to speak out about her own diagnosis of psoriasis.

“I decided to film a documentary series about psoriasis so I went around the country interviewing fellow sufferers and testing out alternative treatments in the hopes of finding a cure, and it was only when I interviewed my Dad, who also has psoriasis, that I gained a greater acceptance of my own condition and a better knowledge of how to treat it more effectively.”

Up to this point, Zoe admits that she had “a very negative relationship” with her own psoriasis, and was “in complete denial” about the incurable nature of the disease. “I also suffered the shame, embarrassment and stigma that is attached to psoriasis and I was constantly trying to hide my patches of dry skin and the scales and scratches from my family and friends,” she says.

When she interviewed her father, with whom she has a very close relationship, Zoe realised that it was “the very first time” they had spoken to each other about their mutual psoriasis diagnosis.

“Here we were, two people who should have been able to talk about anything, a parent and child, and yet we didn’t open up to each other about our psoriasis until I was doing my thesis, and that made me feel almost angry in a way, and I felt there was such a sense of injustice in that.”

The resulting documentary called “Searching For A Cure” has not yet been broadcast, but Zoe Ryan is hoping to get the opportunity to have it aired at some stage in the future.

When Zoe Ryan went looking for the psoriasis community online she was inspired by the people who were willing to share their stories and who were not ashamed to show their skin, instead of hiding it, and this made her all the more determined to do something to bring about a change in the way society views psoriasis.

“I noticed there was a lack of an Irish presence online so on World Psoriasis Day last year so I decided to share my story on my personal Instagram page with accompanying images showing the day to day reality of living with psoriasis” she says.

Following an overwhelmingly positive response, the young Tullamore woman launched her own psoriasis awareness platform “Itching To Tell You” on World Psoriasis Day in May of this year on Youtube, Instagram and Twitter, and this week she is launching a new Youtube series called “Itching To Tell You Investigates” in which she will interview experts in certain areas and also investigate topics of interest to people living with psoriasis on the island of Ireland.

“I strongly believe, and have always believed, that if the right information was available to psoriasis sufferers it would really benefit them in terms of being able to end the shame, stigma and embarrassment of the condition, and it would also help them to be able to manage their symptoms,” points out Zoe, who adds that the right information “is not easy to access.”

While every item of information posted by Zoe Ryan about psoriasis on her social media platforms is fact-checked, she is anxious to point out that she is not a medical expert. “There is a lot of misinformation out there, and I would see my role as being in a position to de-stigmatise psoriasis and give people the information they have been unable to access up to now.”

Zoe says her parents, Denis and Theresa have always been “extremely supportive” of everything she has done, as is her sister, Janene, and they are delighted that she has finally come to terms with her own diagnosis of psoriasis.

The young journalist became involved with the Innovate for Life movement, which is run by the representative organisation for the research-based biopharmaceutical industry, and this led her to telling her own story of living with psoriasis and her hopes for a better quality of life through science in a documentary-style film released earlier this week.

Even though she has grown to fully accept her psoriasis at this stage, Zoe Ryan does admit that her condition continues to affect “every aspect” of her day to day life. However, with better treatments and armed with a wealth of knowledge she is able to manage her skin condition and live a normal life.

“Living with psoriasis, which affects your visual appearance, means that sufferers don’t meet the beauty ideals that society sets for us, but my ultimate hope is to see this skin condition becoming more mainstream in the media and in public life, and to end the shame and stigma around it,” she says.