MEET SHERRY SOON

“My crazy is living life as meaningfully and purposefully as I can, because life is short!”

MY STORY IS …

I was leading life as an average 19-year-old student studying engineering at NTU (Nanyang Technological University) when one day, I was woken up from my sleep by a sharp pain radiating down my left leg. This led to a left foot drop and I was sent to the A&E department of Tan Tock Seng Hospital. After a week of investigative tests, I was diagnosed with Vasculitis, an autoimmune disease, that resulted in an inflammation of the blood vessels in my feet. At that time, the Vasculitis had affected the nerves in my left foot and it took about a month to recover, although it had left me with Peripheral Neuropathy.

I didn't know at that time that this would be a life-changing diagnosis, and I would be on lifelong medications. I also left my undergraduate studies halfway as I could not cope with the degree that I was not interested in, and later on, graduated from RMIT (Royal Melbourne Institute of Technology) with a business degree.

Initially, the flares resulted in ugly red spots on my legs. They were not itchy or painful so I ignored them, and took more medications to suppress the inflammation. A few years later, the flares gave me gaping pus-filled ulcers on my feet. I was hospitalised and homebound for one to two months. These flares disrupted my life and I went through bouts of depression due to the pain and not knowing when they would get better. There is no cure for autoimmune diseases and the medications that I take have also caused serious side effects. For example, due to steroids, I have Osteoporosis and suffered a hip fracture after a freak accident while travelling in Japan. I am also currently on Cyclophosphamide, a low dosage chemotherapy drug, that has lowered my estrogen levels and had to be placed on Hormone Replacement Therapy.

Since I’m not able to walk long distances or stand for a prolonged period of time, this affected my career choices. I was unable to work as a nurse or a government school teacher due to these restrictions. However, I have been privileged to work with students with special needs for the past decade. This has led me to advocate for various 'invisible' conditions and disabilities through Be Kind SG, a ground-up movement I founded in 2017.

Currently, there is very low awareness of autoimmune diseases here in Singapore. In 2013, I started Autoimmune Diseases SG, an informal support group for people diagnosed with these conditions in the hope that we can share our knowledge and support each other.

I hope that no one else would have to go through this devastating journey alone.

November 13 was World Kindness Day. We are dedicating the month of November to kindness. We asked Sherry about what kindness meant to her and this is what she shared —

Kindness is about meaningful connections. When we understand that we are all connected, we will treat each other with respect and kindness.

photography Harriet Koh