Linges Warry Apparao, better known as Linda Rao, is one of them. “It started when I was two years old,” she told FMT Lifestyle in conjunction with World Rare Disease Day today. “Until I was six, I could walk, with the help of a walker, but couldn’t run.
“Even for short distances, I moved very slowly and got tired quickly,” said the now 25-year-old.
At age six, she contracted a fever and was subsequently diagnosed with progressive alveolar hyperventilation syndrome, a condition that affects her breathing. She ended up in the intensive care unit for a year.
Linda was given a machine to help with her breathing. Although she initially only used it at night, she later began depending on it for most of the day, except when she ate or left the house.
Before the age of 10, her mother would carry her; afterwards, she began using a wheelchair. Sadly, Linda was eventually diagnosed with yet another condition: scoliosis, a sideways curve in the spine.
In secondary school, while her classmates toted textbooks and lunch boxes, Linda had her trusty breathing machine and a fan to keep the machine cool.
“I started to realise I was a special person, physically. I had special requirements compared to the others,” she said in reflection.
Yet, Linda couldn’t help but feel lonely. “I always thought I was the only one in the world with this condition, because I couldn’t see anyone else like me.”
Even when she met other differently abled individuals, she felt a disconnect from them owing to her multiple conditions.
‘Ugly truth’
Like most girls, Linda has always had an interest in fashion and, when she was young, even dreamt of becoming a model.
“But in those days, the world was not as safe or inclusive. They preferred a certain type of model; you needed to be fair enough, tall and slim, and wear your heels. That’s the ugly truth.”
To fit in, she began posting edited photos of herself on social media, never once revealing that she used a wheelchair and breathing machine.
“I didn’t want the same questions to be thrown at me: ‘What happened? Why? Can’t you go to this hospital or try this kind of treatment?’” she explained.
Then, at 20, she decided to stop hiding: “I had to come out because I couldn’t stay fake.”
While some followers were supportive, others made hurtful comments. Still, Linda was resolute in tuning the negative voices out.
During the pandemic, she started Absolute Glam By Linda Rao, a business selling beauty products such as eyeliners, lashes and beauty blenders.
And her courage ultimately paid off when she was signed by Don Management, a local talent and modelling agency. Subsequently, in January, she won the “Miss Congeniality” title in the Miss Amazing Malaysia 2023/2024 beauty pageant, which celebrates differently abled women.
Today, Linda has a diploma in management and a full-time job as a coordinator in the HR department of an international company. She also enjoys sharing snippets of her journey on social media, hoping to inspire others.
Despite how far she has come, she shared that judgements against her still exist. “People assume I’m weak, uneducated, just a normal girl who stays at home. But I feel like I’ve done many things to educate myself and others.
“So, please do not judge others without knowing them.”
For Linda, the definition of beauty is “self-confidence”. She concluded: “I want to say to my brothers and sisters who have rare diseases that the world is changing. At the same time, you need to come out to feel confident about yourself.
“It is okay to be different because trust me, all of us are different.”
Follow Linda Rao’s journey on Facebook, TikTok and Instagram.