Despite chronic pain, Priscilla goes from crutches to supporting others

 

Priscilla Ong goes through gruelling physical therapy sessions nearly every day of the week to treat her complex regional pain syndrome. (Priscilla Ong pic)

PETALING JAYA: Learning to walk may come naturally to many, but for Priscilla Ong of Johor, it is a task that takes six hours almost every day of the week.

After a fall down the stairs at 15, Ong sustained a fractured ankle but was told it would be good as new in no time. However, her doctor noticed that her left leg was still abnormally swollen when she removed her cast two months later.

A series of scans and tests revealed that she had complex regional pain syndrome (CRPS), a rare neurological disorder associated with prolonged pain on a specific area of the body, due to an interference in the pain impulses that are sent to the brain.

“For me, it’s a burning pain. It feels very hot and it’s a kind of tingling sensation where you feel like you’re walking on a thousand needles,” said Ong, now 21.

She recalled spending months recovering at a hospital in Johor Bahru as she underwent physical therapy to learn how to walk again.

Although regaining the mobility in her legs had its own set of difficulties, Ong faced bigger hurdles when she was well enough to return to school, using crutches.

Since 2015, Ong has used crutches to go to school. (Priscilla Ong pic)

“People thought I was an attention seeker. My teachers assumed I was exaggerating whenever I spoke about my pain, because I looked fine on the outside,” she told FMT.

Several incidents of being ridiculed for using crutches led Ong to “find more excuses” to go back to the hospital, where she felt safe.

Last March, Ong was admitted to hospital again when the pain in her ankle resurfaced and she has undergone two surgical procedures to relieve the pain. She said they had helped a little, but the pain “still comes and goes”.

She is currently attending physical therapy six days a week to regain her muscle strength and desensitise her pain receptors. “The sessions vary, but they normally last about five to six hours each time. It’s kind of like a full time job,” she said.

Despite the adversity, Ong remains cheerful and optimistic about her condition. In between therapy, the aspiring biologist is applying to further her studies at universities in the US.

“Chronic pain as a medical condition hasn’t seen the same degree of improvement as other medical conditions. The standard cure is always the prescribing of painkillers, which have a lot of adverse side effects, but I hope I’ll be able to change that by contributing with research work,” she said.

A supporter of women in the fields of science, technology, engineering, and mathematics, Ong also aims to pursue a double major by combining biology with gender and sexuality studies.

She hopes to become “an innovative leader in the research field of pain mechanisms and also an advocate for underrepresented communities”.

Ong has founded Project Healing Pain, an initiative to support CRPS patients globally and raise awareness about the rare condition.

While the initiative is currently based on Instagram, Ong has dreams of expanding it to become a multilingual platform in order for people with CRPS to connect with each other around the world.

She eventually wants to start a foundation under Project Healing Pain to provide financial assistance for other CRPS patients, having gone through the expensive treatments and physical therapy sessions herself.

Amid the ups and downs, this ambitious young adult has proven that life cannot be taken for granted and that one has to make the best out of every situation.

“Sometimes it’s hard to wake up, get dressed and go to the hospital where the sessions are very painful and long. But some days, I am inspired by my own progress, and my condition has made me even more grateful for every little step I’ve taken.” - FMT