"I Found My Purpose" — Malaysian Beauty Queen Shares How Psoriasis Made Her Stronger
"Even if I inspire one person, it's an achievement for me," said Sofia in a conversation with SAYS.
The beauty of life can often be attributed to its sheer unpredictability.
But as many of us learn far too often, it can sometimes be filled with blessings and numerous challenges.
43-year-old Sofia Lovi Ramasamy has faced many daunting obstacles in her life, but none more dispiriting than her diagnosis with psoriasis, an autoimmune condition which causes inflammation to the skin, at the age of 12.
Starting off merely as dandruff on her scalp, Sofia stated that her family had no idea what the condition was until she was diagnosed by a dermatologist. A self-proclaimed social butterfly as a child, Sofia said that the diagnosis felt like a "tight slap across the face", leaving her wondering why this was happening to her.
"There wasn't any social media platforms back then, so my family members and I had no idea what it was. My confidence and self-esteem were torn into pieces," Sofia shared with this SAYS writer.
While many often regard psoriasis as a skin condition that brings on physical deformities to the exterior of one's body, Sofia explained how it affects so much more than that
Evolving over time, Sofia stated that her condition originally existed in the form of plaque psoriasis, a variation that causes dry and itchy skin. However, she soon saw the condition morph into erythrodermic psoriasis, causing 90% of her body to be covered in lesions.
Due to the psoriasis, Sofia eventually developed arthritis, advancing her condition once again to psoriatic arthritis. Starting off mild, Sofia mentioned that the psoriasis prevented her from being active in school, as she admitted to having the misconception that, if she took care of herself internally, she would soon heal. But this wasn't the case at all.
Before officially receiving the diagnosis, a lack of information among those around her brought discussions of black magic, with people close to her family suggesting that she had been cast with a dark spell. Open to such information at that point in time, Sofia stated that this encouraged her parents to bring her to clergy priests and even a bomoh to find any solution to her skin issue.
It would take the family's exploration another 10 years until they finally discovered that it was psoriasis.
Living with psoriasis for about 35 years at this point, Sofia talked about how the condition caused her to ostracise herself from friends and family for the longest time
Having originally went to law school during her university days, Sofia mentioned how she decided to take a break from the world of academia due to the stress that came along with preparing for examinations. Expounding on her troubles, Sofia shared how she would end up in the hospital a week before all her crucial examinations purely due to stress, causing other issues in her body to flare up alongside the psoriasis.
As for her social life, she also stated how clothing was a huge issue for her, as she'd seek to cover her entire body from top to bottom, including her neck and fingers, to feel comfortable going out.
Missing birthdays and weddings, she stated that she slowly started to come out of her shell with support and encouragement from her family to dress as she pleased.
"They always encouraged me to be myself. It took years for me to understand what that truly was, but it's very natural to be concerned about what people think about you," she exclaimed.
Reaching the pit of her experiences, Sofia described the lowest point in her life when dealing with psoriasis, where she almost died from the condition back in 2014
"At that point, I was completely bedridden and couldn't function because of my arthritis. I couldn't do anything — bathing, eating, going to the bathroom. I felt like a vegetable and it was so frustrating. In my early 30s, I felt like this was supposed to be the prime of my life, and I felt so useless," she expressed.
Putting her faith in God and religion in that moment, she pledged herself and her life to contribute more good work to society, asking a higher power to give her the opportunity to make something more out of her life.
Two to eight weeks later — the impossible happened. Sofia started to recover from the ailments that, at a moment in time, had her family members convinced that she was dying. Being able to walk and move around, her life would soon change for the better.
As of present, Sofia still experiences pain in her spine and has issues turning her neck in either direction. Her fingers are now in a bent position, having undergone a form of deformation just a few years ago, as she continues to experience the effects of rheumatoid arthritis and fibromyalgia syndrome.
However, due to the help of biologics, a diverse group of various medicines, she has been able to generate flawless skin despite facing ongoing psoriasis.
Shortly after making a recovery from her condition, Sofia came across the Psoriasis Association of Malaysia (PAM), the nation's leading organisation dedicated to improving the lives of people with psoriasis
Just a few months later, Sofia had done an interview with The Star, sharing her experiences in hopes that she would inspire other people who also had psoriasis.
After her sister posted the article on the official PAM website, Sofia stated that Dominic Wong, a committee member of the organisation, reached out to her to see if she wanted to volunteer with them. Without thinking twice, it was an immediate yes on her part.
Passionate about the work that was being done by the committee to strengthen awareness on psoriasis, Sofia's role soon grew, with her currently residing as the organisation's official secretary.
Embellishing on some of her work with the association, Sofia stated that she was most proud of a campaign they had organised alongside Malaysian singer-songwriter Zee Avi. Graciously composing a song related to psoriasis, the hit would eventually become one of the first songs on health awareness in Southeast Asia.
Watch the full music video below:
And while her achievements at PAM are an incredible feat on their own, Sofia's admission in the Miss Amazing Malaysia 2019 pageant would become a highlight for psoriasis awareness around the nation
"My friend Nadeera Vasu (who has since passed away), told me about the competition and how it wasn't your typical beauty pageant. After my family encouraged me to take part in it, I decided to take the opportunity as a chance to spread awareness about psoriasis," explained Sofia.
Detailing the six-month long search process, Sofia stated how she and her other competitors learnt communication skills, presentation skills, mental wellness care, and even first-aid training. "It was a beautiful journey," she added.
The competition divided contestants into two participating groups, those physically challenged, which Sofia competed in, and those intellectually challenged. Gearing up to competition night, Sofia's hard work and dedication paid off when she took home the crown for her category, emerging victorious.
When asked about how she felt, Sofia said that winning the crown never even crossed her mind, and that the platform she had to speak on psoriasis was what she cherished the most.
"No matter what you're going through, when you put your heart and soul into something you want, and you have the skills to back it up, you too will shine. You don't need to be a superstar, but you can be your own superstar," shared the beauty pageant winner.
Despite her immense success in so many avenues of life, Sofia believes that her journey may not have been as fulfilling without the challenges she faced through her condition
"I don't think I would have come this far. I probably would have lived a very mediocre life. Life is beautiful, it's worth living in the moment no matter how much hardship we go through. There's a reason why I was born in this world and God gave me these tests in my life, but I found my purpose," she said.
In expressing her hope for the future, Sofia's goal is to work towards eliminating the social stigma that comes with people who have psoriasis, and by providing equal access to medication for individuals who are facing the skin condition, "Support, motivate, and encourage people as much as you can".
Sending a message to all those who are plagued by the brutal skin condition, Sofia stated that while there may be no cure for it as of yet, a change in mindset may be all a person needs to face their challenges.
"I hope they remember that this too shall pass, but it does depend on how you perceive it. Know what your sense of purpose in life is, and then you will know what you will achieve down the road," she added.
Reaching out to all Malaysians on how they can best support people who are facing psoriasis, Sofia had this to say:
Treat everyone equally, because no person is lesser than another. Today it can happen to someone else, but tomorrow it may happen to you.