Skin Articles

Stevens-Johnson Syndrome is a very rare skin condition that affects one to two per million people every year. Back in 2011, Marian became one of those people when an allergic reaction to eye drops left her in an induced coma.

Ten years ago, Marian started to feel her eyes itching and was advised by her GP to buy some over-the-counter eye drops. Very quickly, her skin began to blister, and her throat began to close up. Unbeknownst to her, she was experiencing was Stevens-Johnson Syndrome (SJS) - a rare medical condition that is triggered by an adverse reaction to certain medications.

“My airway started closing up and the bottoms of my feet started swelling. I was really scared,” Marian shares, explaining the moment she first realised something was seriously wrong. She continues: “It went from bad to horrific when I started throwing up thick blood in the hospital.”

Stevens-Johnson syndrome affects the skin, genitals, eyes and mucous membrane. The mucous membrane is a soft layer of tissue that encases the digestive system, sexual organs, and eyes. When someone is diagnosed with SJS, their immune system attacks this membrane which causes a variety of very painful symptoms.

"I never believed that it was going to go from me using eye drops to being in an induced coma, to all of my skin, hair and toenails falling off!
I just cannot believe that happened to me!" 

On top of dealing with her symptoms, Marian was also faced with confusion from nurses and doctors who put her quick deterioration down to swine flu. With the global flu outbreak happening only months before, she was placed in an isolation unit knowing full well that she didn't have the flu. Later, Marian was moved to another hospital where she was diagnosed with SJS and put into an induced coma because of the severe nature of her symptoms.

Looking back on what happened to her, Marian recounts: “I never believed that it was going to go from me using eye drops to being in an induced coma, to all of my skin, toenails and hair falling off. I just cannot believe that happened to me!”

Today, Marian’s infectious energy shows nothing of her experiences. She reframes her awful experience into a positive one: “It’s a positive situation because I am alive to tell the story. I want people to be inspired and gain hope from my skin, my story and my scars!” 

Despite her positivity, Marian's life isn't easy. The allergic reaction has left her with a weakened immune system which has made living through the coronavirus pandemic even more difficult. During our call, she admits how fearful she was to leave her house over the last 18 months. Even before this year, Marian has had to change her diet to ensure that her immune system is strong enough to fight off the bugs that we’re exposed to every day. She also applies lubricating eye drops every day to make sure her eyes are healthy. 

Taking these adaptations in her stride, Marian dedicates her time to educating herself and others about SJS via collaborations with the NHS and her ‘My Scars Tell A Story’ social media campaign. Born from the confusion around her own diagnosis, she explains: “There is only so much that doctors and nurses can do, people have to do their own research. My main aim is to encourage more research into SJS and to make sure people do their homework.” 

"I am here to amplify my voice to break the stereotypes that exist within skin health representations"

Marian’s online campaign encourages everyone to take pride in their scars by sharing images and their stories on Instagram. Having found cathartic relief in sharing her own story, Marian believes that everyone should celebrate their skin as part of their healing process. She says: “Scars are not just physical; they are emotional too. Every scar represents a part of the story that has made you who you are today, and everyone should celebrate that.” 

On top of her researching, sharing, and celebrating, Marian is also an advocate for the greater representation of black and brown people with skin conditions and scars. “When I was going through the ordeal that I faced, I was unable to find a representation of myself on health websites,” she shares, continuing: “I am here to amplify my voice to break the stereotypes that exist within skin health representations.”

This month, Marian wants more people than ever to submit their stories to her photography campaign. To find out more about the campaign, follow myscars2020 on Instagram.

You can learn more about Marian's story from her blog post for the British Skin Foundation!