When you meet Sofia, it’s hard to miss the beaming smile she wears on her face. I tell her that it’s unimaginable what this warm lady has gone through and still is going through. She giggles at my comment and exclaims, “That’s why I earned myself the subsidiary title of Miss Optimistic in Miss Amazing Malaysia!”
Crowned as the first winner of Miss Amazing Malaysia, a beauty pageant for physically challenged women, Sofia’s ultimate wish is to bring psoriatic arthritis to light. “I was diagnosed with psoriasis at age 12. I didn’t know much about it at the time. I thought it was just a skin problem,” she begins. Psoriasis – a skin condition that causes rapid build-up of skin cells, leading to scaling and red itchy patches – is never a widely discussed disorder. When she turned 14, engaging in sports became a torture. “It started with just my toes. Eventually, moving my joints hurt so much, let alone doing sports. It was frustrating and devastating. I really loved taking part in sports but my chance to enjoy it was snatched away from me.” At such a young age, Sofia thought the symptoms would go away with time, like a bout of cold. And then she learnt that was not the case.
HURDLES TO OVERCOME
Psoriatic arthritis is a chronic condition that combines swollen and sore joints; it happens to 10 to 30 per cent of psoriasis patients. It is a hidden or ‘invisible’ disability that is overlooked by the general public. People with psoriatic arthritis have reduced mobility, where performing simple tasks like unbuttoning or lifting things can be challenging. Sofia demonstrates how she types with only two fingers on her keyboard and still endeavours to do her best in getting her work done. “If I need to button up my undergarments, for example, say if there are three buttons, I just simply do one and leave the others out. If my sister is around, she usually helps me with it,” she explains.
After a few near-misses while driving, due to flare-ups that came without warning, Sofia decided to take public transport instead. “In my case, psoriasis comes together with arthritis. The scientific term for it is ‘co-morbidity’, where psoriasis affects other parts of the body. In the long term, one’s vision will be affected. There’s also a greater chance of developing diabetes and hypertension.” Currently, there is no cure for the disorder but treatments to control the symptoms are available.
Aside from the excruciating pain in the joints, most psoriatic arthritis patients go through emotional distress. “It was difficult for me. I was at the age where I was supposed to be having fun with friends but this came like a slap in the face. I always questioned, why me, why am I the abnormal one?” shares Sofia. “People would assume that I had psoriasis because I was not hygienic enough, which was not the case. There were even people who thought it was caused by black magic or that my parents’ sins had been passed down to the next generation. I never wanted to talk about my condition back then. Most of the time, I’d cover myself with long sleeves or wore my baju kurung uniform as much as I could.” Sofia also recalls hating outings the most because she couldn’t dress up like everyone else. “I wanted to look good and fashionable, too, but it was always the same long sleeves, over and over again,” she says, sharing the memory.
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