Youth starts support group to help others suffering from chronic conditions

  • Family
  • Sunday, 07 Mar 2021

Ong (right) with her friends (fe left) Cassandra Chow, Piruntashnee Kesavan and teacher Tiong Yien Ching. Support from her family and friends helped her through her painful journey dealing with CRPS. Photos: PRISCILLA ONG

Today is International Women's Day, a day where the world unites to celebrate the achievements of women while pushing for greater equality, highlighting gaps in policy that continue to isolate women and keep them from enjoying equality at home, in the workplace and in society. StarLifestyle is highlighting the stories of young women who are stepping up and taking action for causes they believe in to make Malaysia a better and safe place for everyone

In July 2015, when she was just 15, Priscilla Ong slipped and fell down half flight of stairs at her secondary school in Johor Baru and fractured her left ankle. As it was a common injury, and she was a healthy teen, everyone – including her orthopaedic surgeon – expected her to make a full recovery.

But when her surgeon removed her cast eight weeks later, Ong was still in a lot of pain and her leg was inflamed and abnormally swollen.

“That was when my doctor diagnosed me with Complex Regional Pain Syndrome. As CRPS is a poorly understood condition without specific test that can provide a direct diagnosis, it took a few days and many scans and tests to rule out every other possible cause for my complication, ” shares Ong, 20.

CRPS is a rare, disabling, neurological disorder associated with unprovoked and prolonged regional pain often, but not always, after an injury.

“The pain is mostly constant but it can also fluctuate with activity. It feels as if I were walking on thousands of burning needles. Sometimes, it also feels like my limb is being squeezed very tight. Besides, my lower leg also had increased sensitivity, called allodynia, whereby even a light touch or normal physical contact was very painful, ” explains Ong.

Ong had to endure many months of intensive physical therapy, coupled with drug therapy, to treat her condition and regain her strength, improve blood circulation and reduce edema and discolouration of her limb. The therapy was also to desensitise her leg so that she could tolerate normal physical contact without pain. She stayed in the hospital for months and it became like a second home for her and her doctors and nurses became her companions and confidantes.

Ong with her parents, Ong Che Beng (left) and Ng Lee Peik. Ong with her parents, Ong Che Beng (left) and Ng Lee Peik.

A champ is born

After almost two years of therapy and treatment, Ong was finally able to walk on her own. She was ecstatic.

“After nearly 20 months, I walked out of the hospital holding flowers, instead of crutches. I thought I was strong for having survived months of intensive physical therapy. “However, that perception soon crumbled when I was wheeled onto the rehabilitation floor again last year, in March 2020, with the same disabling diagnosis, ” she reveals.

Ong had suffered a relapse and had to undergo much of the same treatment again.

It was agonising as she was about to enrol in university and begin the next phase of her life.

“I couldn’t even bear to look at myself in the postural training mirror as three physiotherapists lifted me up from my wheelchair to begin physical therapy.

“Having spent a quarter of my adolescence learning to walk again, I didn’t fear the long painful recovery. But I didn’t have the courage to meet my own reflection and face the crippling guilt. I blamed myself for my parents’ heartache.

“If only I had taken better care not to have fallen. It was irrational but it was hard to get past, ” shares Ong.

But, as difficult as it was, Ong got past her physical and mental trauma with the support of her family, friends and the medical staff at the hospital.

Her experience has driven her to create an online platform offering support to others suffering from CRPS and other debilitating conditions.

“There was a point in my battle with CRPS that I could hardly sit up by myself. I woke up everyday feeling excruciating pain and I wasn’t able to do much.It was during these times, when I was the weakest, that I realised my experience was no different than the experience of any other CRPS patient.

“However, I realised that not everyone has the support that I was lucky enough to have. My family would set up a playlist of podcasts so that I wouldn’t feel alone waking up at odd hours in the night.

“Because my parents don’t speak English well, I had to make my own medical decisions. My doctors would sit with me and explain each procedure whenever I became confused.

“My doctor even revised my school work with me sometimes after his work day ended. My friends and I would Face Time to keep me occupied.

“So, in an effort to spread that same love and comfort, I organised support groups for patients with chronic and terminal illnesses at the hospital. This led to Project Healing Pain, ” shares Ong.

Project Healing Pain

Starting a support group for others, shares Ong, helped her get past feelings of anguish over her “lost adolescence”.

“Instead of spending hours fantasising about returning to ‘normal life’, Project Healing Pain gave me a purpose.

“I had spent years hiding my experiences of living with a debilitating condition because I saw it as an insurmountable adversity – one that made me different in the worst ways possible.

“Also, when I did go back to school, on crutches, I was teased, bullied and discriminated against and I used to find any excuse to come back to the hospital as I felt accepted there.

“However, through hearing others’ experiences, I’ve come to realise that these painful moments are when I feel a sense of humanity and empathy (for others).

“We all have moments when life seems overwhelming. We all have places where we fear pain and the unknown. But my pain and disability gave me the incredible gift of being able to face adversity and I choose to empower the CRPS community, ” says Ong.

Project Healing Pain is an online platform that provides support for CRPS patients worldwide by matching them with another patient who is going through a similar experience.

Ong also shares her own personal experience of living with CRPS and the lessons she’s learnt on the platform.

“Living with CRPS can be very depressing as it is both physically and emotionally demanding so I try to strike a balance between reality and positivity in my posts, ” she shares.

So far, she has managed to match about 170 people from all over the world suffering from CRPS and other crippling conditions.

Patients are matched based on various factors: Details of their diagnosis (which gives them things in common) languagd spoken, country of origin or residence and also their personal preferences.

“Based on the messages and comments I have received, I think that Project Healing Pain has reached CRPS patients worldwide because my story resonates with them and they feel they aren’t alone in their journey.

“In the near future, I aim to turn my page into a multi-lingual platform in order for me to connect more people who might need a support group like this. I’m working on making each of my posts into a few other languages, including Spanish, Chinese, French and German. I chose these languages based on the feedback I have received from Project Healing Pain’s followers.

“I’ve also received collaboration invitations from two other CRPS projects on Instagram to help raise awareness and provide support for CRPS patients, ” says Ong.

She also hopes Project Healing Pain can raise funds to help other patients fund their treatments as medical costs for CRPS are high.

“Having gone through CRPS twice I’m well aware that a lot of the medical procedures for chronic conditions, such as physical therapy, are not covered by insurance. Coupled with the fact that chronic conditions like CRPS need months, if not years of treatment, the medical bills are most likely to be exorbitant. I’ve also come across CRPS patients who lost their jobs because of this illness and struggled to support their families. I hope my project can provide them with financial support, ” she says.

A life of service

Ong is currently looking forward to pursuing her tertiary education: a double major in Biology and Women’s, Gender and Sexuality studies.

“I aspire to become a researcher specialising in pain research and I want to devise a gene silencing therapy capable of targeting specific neuropathic pain mechanisms to offer long-term pain relief to neurological pain patients without repeated doses of narcotics.

“My interest in gender studies is to complement my goal of advocating for women in STEM fields.

“I also want to learn about the role of gender in the struggles that many marginalised communities face and examine the critical theories behind how these struggles manifest themselves, ” says Ong who also actively volunteers with children from marginalised communities, helping them learn.

“Although I’m still trying to rewire my neurons and reverse my muscle atrophy, when I look in a mirror now, I celebrate being able to stand a minute longer or walk a step further than the day before.

“I am proud of my life, not in spite of CRPS, but because of it, ” she concludes.

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