Carly Findlay has been teased, asked to leave shops and rejected by internet dates because of her disfiguring skin condition, but the plucky 29-year-old refuses to let other people's ignorance keep her from achieving her dreams.

It's been a battle from day one for Carly, who has ichthyosis, a rare genetic disorder affecting just one in every 100,000 people. Born with scaly red skin and seriously underweight, doctors warned her parents that she might not even survive childhood.

Now, nearing 30, Carly is thriving. She has a full-time job working with the government, is studying for her masters degree and, in her spare time, blogs and presents on a local community TV station.

"My whole body is red and scaly, and my skin is often itchy and sore," Carly explains. "My face is the reddest part of my body because it's exposed to the elements and I get infections once a month – generally on my legs. It gets really hard to move and at times the infections have got so bad that I've been hospitalised, put on an IV drip and bandaged up like a mummy."

To prevent infections from developing, Carly has a strict skincare routine. She showers twice a day to gently exfoliate her skin and covers her body with Vaseline afterwards, which acts as a protective barrier and moisturiser.

"I don't wake up looking the way I do during the day," she reveals. "My skin renews through the night as I sleep, so I have to spend a lot of time when I wake up to help shed some of it as I wash. Because of my condition my body doesn't regulate its temperature properly. I'm often cold so I wear a lot of long-sleeved tops and stockings – it helps protect my skin from the sun, too as I can't wear sunscreen."

She also can't wear make-up, go to a swimming pool because of the chlorine and gets tired more easily than others.

Despite the impact of her condition on her day-to-day life, Carly says it's been easier to manage as she's gotten older – as have the harsh comments and bullying from ignorant people.

"Dad would always tell me to take pride in myself, be well-presented, always smile and be a nice person," she says of her difficult childhood. "But I was bullied a lot and teased with nicknames like “red skin” or “skinner”. I was desperate to be just like everyone else but it took years before I became happy being different and happy to be me."

Things improved when Carly was 17 and working part-time in a supermarket. "It was the best thing I could've done – I grew so much confidence and made friends that I still have today. It also helped me handle people's reactions to my skin in a professional way. Having that job gave me the confidence to be proud of who I am and the way I look."

Being comfortable with her appearance has also helped Carly in relationships. "I've had boyfriends in the past and, because I've been so comfortable with my skin, they've never had a problem with it either."

"Online dating is hard," she admits. "I like that you can build a rapport with people first so that they get to know you as a person rather than focus on how you look, but sometimes when you actually meet, you can tell how uncomfortable my looks make them. One guy emailed me after a date, saying, “You didn't tell me you were going to be that red.”

It was pretty crushing but what was I meant to do? Send him a paint swatch sheet and make note of the colours “Fire Hydrant Red” for bad days, and “Chipolata Sausage” for good days?

"I know the right guy will come along eventually. If all else fails, I'll always have a really full life with my friends and family. Perhaps I'll get a dog." But it seems that nothing – not even the casual cruelty from strangers – can stop Carly from enjoying her life to the fullest.

She has her own award-winning blog – carlyfindlay.blogspot.com – and wants to spread the word about disability acceptance.

"Having a disability doesn't stop you from doing anything –last week I went to see two bands, I worked full-time and went out for dinner with friends," Carly says.

"I want to break down prejudices and, as I've learnt to do, give other disabled people the confidence to hold their heads up and smile."

• See page 66 for Carly Flynn's advice on how to stop bullying.

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