TO ADVOCATE and volunteer for something that not a lot of people are aware of is by itself a challenge already. It is never simple to raise awareness about an illness or a deformity while also tending to the people who have it.
Scoliosis is generally defined as an S-shaped or C-shaped curvature of the spine, the degree of which varies. It is usually found in females but there are also male cases of scoliosis.
As this was not widely known in the Philippines a few years ago, there was no community and support group for scoliosis. Patients were facing the challenges all by themselves. For those who heard of the condition for the first time, they might have done their research on their own or was briefed by the orthopedic upon diagnosis.
But this was until July 2011 when Amanda Bonife-Kiamko, a scoliosis patient herself based in Davao City, founded a small support group Help Fight Scoliosis on Facebook. This was initially intended for family, friends, and friends of friends with scoliosis as she understood herself the physical and emotional pain that it brings.
Managing the support group helped her realized that more and more scoliosis patients (which she later on called scoliosis warriors) needed support and awareness. Two years after, she created Scoliosis Awareness Philippines page and in 2015 the Scoliosis Philippines support group hoped to reach more Filipino patients.
“It was pain that pushed me to open my mind and inspired me to be passionate about what I do. I don’t want the future generation to suffer from the debilitating effects of scoliosis. I will continue to campaign for awareness and provide support. I hope to see a scoliosis-free Philippines before my time comes. If not zero, at least curb the number of cases with severe scoliosis through early detection and early intervention,” Kiamko said.
She said the most challenging part of this volunteering journey is looking for funds they would need for conducting events, meetings, campaign materials, travels, and financial assistance for the less fortunate patients. Over the years of actively campaigning for scoliosis awareness and early detection, she had partnered and worked with different sponsors such as Duncan Tree Foundation and the Tebow Cure Hospital for free scoliosis surgery on severe cases.
Now, from a support group intended for family and friends, it now grew to nearly 14,000 members nationwide while the awareness page has now nearly 37,000 followers.
“For the past seven years, I have organized awareness events, established partnerships with stakeholders, healthcare providers, media and private companies, reached out to patients and family members, providing support through our online forum and gatherings, raised funds for patient beneficiaries due for surgery, lobbied with the Department of Health (DOH) to give attention to scoliosis. All these I did while I was going through my own battle with severe scoliosis, multiple slipped discs, hypo kyphosis (flat back), and degenerative spine,” she said.
Her volunteer efforts for years have not been put to waste as now, Scoliosis Philippines, Inc. is Securities and Exchange Commission registered and already a bonafide member of the Philippine Alliance of Patients Organization (Papo). They are currently waiting for the signing of the Presidential Proclamation on Scoliosis Awareness Month and Scoliosis Program of DOH.
“I turned my own pain to passion and purpose and able to make a difference in people’s lives. I’m inspired daily. It’s priceless!”