Why albinos are misunderstood: three women speak out The condition has not held her back. She took A-levels in art and graphic design, despite the challenges they pose for someone with vision problems. She was a gymnast until she injured her knee and has travelled a lot, spending several months in Australia. Sunblock helps. Why should I miss out on a proper holiday? Bianca Knowlton Johnson, 30, practises complementary medicine And her exceptional looks have never stopped her having boyfriends. "My dad might have liked it if it had," she jokes. In April she'll celebrate her fourth wedding anniversary. Children are a possibility, but not until her complementary-medicine business, Beeholistic, is more established. "I'm living proof you can be born with full-blown albinism and lead a normal life," she says. The fact that Knowlton Johnson was born with albinism may, in fact, be the least remarkable thing about her. Nevertheless, her birth, 30 years ago, was a shock to her parents, Mike and Carin. In those days people didn't know what albinism was. A doctor dusted off a file and put my parents in touch with someone born with albinism 20 years earlier," says Knowlton Johnson, whose parents chose the name Bianca, which means white, before she was born. Her parents" determination for her to live a normal life meant she never saw herself as different from her siblings. My dad says he had me on a bungee cord - he could let me go but pull me back. It means as an adult I don't have to rely on them. Learning to navigate the world despite visual impairment is the first hurdle facing people with albinism. When the local authority suggested she attend a special school, Knowlton Johnson's parents fought for her to attend mainstream school, and she was given an auxiliary assistant. Bullying started in secondary school. The teachers were supportive, but some pupils were less kind. Her bag was thrown in a puddle; she was pushed and had her hair trodden on. Dealing with albinism was really hard, but I wasn't the only one bullied, and all teenagers are anxious about how they look. Does he like me? Am I pretty? Is my hair nice? I wasn't any different. Adolescence was a "turning-point." It would've been easy to get pushed aside, so I knew I had to totally get to grips with being albino. I embraced the fact that I am who I am, but if you don't like me, you can push off. Knowlton Johnson and her family are unwaveringly positive about her condition. "We got all the practical help we could, but wanted her to stand on her own feet," says her father. Albinism isn't a life sentence. He believes his daughter's tenacity and lack of self-pity are characteristics many people with the condition share. She is, however, unusual for using the term "albino." Not using it makes more of a point about being different. I don't see myself that way. I'm relaxed saying, 'I'm an albino. With the odd exception, that word hasn't been directed at me in a derogative way, although I appreciate others have a different experience. Rosaleen Dempsey, 33, works at the RNIB, Northern Ireland Rosaleen Dempsey, 33, shares Knowlton Johnson's determination, but prefers not to use the term. "I don't like the way it usually comes before an insult," she says. Dempsey is from Belfast, where she is the children and youth-service manager of the Royal National Institute of Blind People (RNIB), Northern Ireland. She's also part of the Albinism Fellowship, set up in 1979 to promote understanding of albinism. With 500 registered members, the Fellowship runs conferences, family days and social events. Information about albinism is relatively hard to come by, so it's a valuable resource for families of recently diagnosed babies. The Fellowship also works to undo the stigma surrounding the condition. The media is riddled with negative, inaccurate stereotypes perpetuating the idea that albinism is weird. This is particularly true in Hollywood," says Robin Spinks, the president of the fellowship, who frequently fields requests from modelling agencies and production companies, the vast majority of which are turned down. "It's not useful, as it perpetuates this idea there's something 'freakish" about the condition. That's particularly difficult for children. In parts of Africa, especially sub-Saharan Africa, living with albinism is life-threatening, as those with the condition are targeted by witch doctors for their body parts. It's hardly surprising, therefore, that there's a sensitivity around the word "albino," although the medal-winning tandem-cyclist Aileen McGlynn, OBE, and the brothers David and Adam Knott - who made Great Britain's goalball squad for the London Paralympics after just two years of playing the game - have helped counter this. "One of my dreams is to see someone with albinism playing a normal role on television, where their hair or skin colour isn't seen as exceptional," admits Spinks. In 2008 Darnell Swallow, who has albinism, was a contestant on Big Brother, but Spinks doesn't feel it was very helpful. It underscored this idea that albinism is strange. Living with albinism means overcoming visual impairment, a propensity to burn and coping with being visually distinct. But, apart from that, people with albinism are absolutely normal in every way. Determination to live a normal life motivated Dempsey throughout her school days. I had a classroom assistant at school, which got difficult as a teenager, when the last thing I wanted was a grown-up looking over my shoulder. I dealt with this by working extremely hard to gain confidence so I'd need less adult help. I went on a ski trip when I was 14, which made me feel good about myself, and joined a choir. Music's always been a big part of my life. She did a BA and PhD at university in Cork, and while she loved the challenge of a new city, she was also bullied. I reframed it as their ignorance, rather than as something negative about me. But it's the reason I'm not fond of the word 'albino. You have to develop a tough skin, which is why the fellowship is so important. It's very moving at the family conferences, seeing young children recognising others with condition. Gemma Sherry, 28, works at the Hilton hotel in Edinburgh When Gemma Sherry was a child growing up with albinism in Edinburgh, her parents were involved with the fellowship, but it wasn't until she was an adult that she became a more active member. "I was lucky growing up with supportive parents who made me feel like I could do anything I wanted," says Sherry, 28, who works as a supervisor and duty manager at the Hilton hotel in Edinburgh. Sherry has an active social life and enjoys abseiling and rock climbing, so her adolescence was busy. Then when I was 20 I decided to go to a family event the fellowship had organised. It was very emotional, and I did feel a big sense of belonging. I made friends I remain close to today and left feeling really positive. Albinism hasn't stopped Sherry from doing anything she wants. I love my job, and I like travelling. I really enjoy beach holidays as I love swimming. Getting out of the sea can be a little hard as when I get back on to the beach it might take me a while to reorientate myself because of my sight, but that's not so difficult. I get the odd cheeky remark, but I find people are interested in why my hair is pale in a positive way. It's possibly easier for women with albinism, as having pale hair is quite fun. I never have roots. Knowlton Johnson has modelled for a feature on natural beauty, and Dempsey enjoys make-up and looking good as much as anyone. I stick to make-up with a pinky base. I like Estée Lauder, Laura Mercier and the Nicola Roberts Dainty Doll range, and have had my lashes and brows tinted since I was 16. It gives my face more definition. Advances in technology have made living with the practical challenges of albinism easier. Robin Spinks is the principal manager for digital accessibility within the RNIB, maximising the way products such as smartphones work to make life more manageable. Technology has transformed my life. I use apps to overcome challenges, using the camera as a magnifier or accessing live departure boards when travelling," he says. He has worked throughout the Caribbean, America, Africa and Asia for an NGO, doing advocacy work with organisations to help disabled people. Technology makes a massive difference, reducing anxiety around travel and independent living. I cannot change the fact I'm visually distinct, but tools that help navigate life makes that challenge less difficult. Like Sherry, Dempsey and Knowlton Johnson, Spinks has accepted who he is, seeing his condition as an integral part of his character. At 39, I no longer have moments when I wish I looked different. I've often reflected on the question of what it would be like not to have albinism, but now I can't imagine living without it. It's made me open and curious and taught me to live life with an understanding of differences. You can recoil, or you can learn to celebrate your difference and use it to learn more about life. I think that perspective is unique. Knowlton Johnson says she'd like to correct her eyesight, but otherwise wouldn't change anything about herself. I don't see albinism as a disability. I'm happy I'll always be an extreme blonde. The greatest frustration is not looking different, or the ignorance of others, but not being able to drive. Albinism hasn't affected my social life or stopped me getting boyfriends, and I'm in a job I enjoy. I think a lot of us share a determination to be really independent, to prove we can do things like everyone else," says Sherry. The only thing I haven't done is drive. That annoys me. Using public transport is fine, but I'd like to drive a rally car. As for having pale skin and pale hair - I'd look weird if I didn't look like this. It's part of me.