At 26 years old, young Rhiannon Morgan is used to receiving stares from strangers.

He is one of the few people in the UK living with a rare genetic skin disease called Epidermolytic ichthyosis.

His skin grows too fast, causing him to blister easily and causing significant mobility problems.

Morgan hopes that raising awareness about these types of visible disabilities will serve to promote their more accurate and inclusive representation in popular culture.

Rhiannon’s life is colored by people’s comments about her strange condition. At the supermarket, people would ask if what he ate was contagious.

“Even though I smile and take things for granted, living with such visible differences is exhausting and can be very lonely,” she says.

And remember that “dstrangers and colleagues find it normal to ask me if I’ve been burned in a house fire“.

This young woman’s skin grew too quickly as a result of a genetic disorder, which also made her susceptible to infections, blisters and hypersensitivity.

You cause significant mobility problemsespecially in the joints and hands, and has to move around a lot in his motorized wheelchair.

“I spend about five hours every day taking care of my skin,” explains Rhiannon, who lives in Bridgend, in the southwest of Great Britain.

“They refused to sit next to me”

He was diagnosed with this rare condition at birth, when midwives noticed his skin was being peeled off with just a tissue.

“When I was born, he appears to have gloves on his hands and socks on his feetwhich is a sign of where it will affect me the most,” he said.

“I was very fortunate to be diagnosed at birth because I was able to receive the medical care I needed from the start.”

However, since then, he admits that he has experienced social barriers living with clear differences.

“Some of my classmates even refused to sit near me,” he said.

This greatly influenced the way he viewed himself during his school years, and as a teenager, avoiding mirrors became commonplace.

“It’s a medical disorder, so when I looked, in my mind, I saw someone who wasn’t normal.he added.

The effect on your mental health

Most of its hospital appointments are filled by students and consultants. He endured years of being watched with a magnifying glass and by strangers.

She said this “affected” her mental health and her perception of her own appearance.

When he was 13 years old, he went to a medical conference where, he said, they forced him to sit on the bed in his underwear and vest. There she had to talk in turn with “about 100 doctors” who wanted to learn all about her skin.

“Some were nice, some were less polite, some even came and examined me with a wooden tongue depressor,” explains Rhiannon.

But he explained that his condition didn’t only give him negative experiences.

“It also gave me a lot of abilities. I can empathize with others, see beauty where others cannot and experience the world in a unique way,” said Rhiannon.

“I wouldn’t change for anything,” he said.

Solidarity campaign

The young woman shared her story for Changing Faces’ “This is Me” charity campaign for Face Equality Week.

I hope this campaign raise awareness about visible ailments and encourage more positive representation in popular culture.

According to a public survey conducted by Focaldata, 33% of Britons recall seeing someone with a marked difference on television.

Changing Faces is a British charity that supports anyone with scars, marks or conditions that affect their appearance. She helped Rhiannon when she was 17 trying out makeup for her sixth grade prom.

“I learned how to tone my skin to reduce redness and what special makeup products to help moisturize my skin,” she says.

“I also found someone to talk to who would listen to my skin concerns without judgment.”

Changing Faces said in a statement: “While we wait for brands, businesses and media to catch up, Changing Faces activists and our volunteer ambassadors, including Rhiannon, are on social media saying ‘This or this is me’, and acting as role models who they, and most of the public, want to see more.”

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