I met Amanda of Scoliosis Awareness Philippines at the #hcsmph advocacy track last April. Her advocacy was mandating scoliosis screening in schools. I promised her then that I would write a blog post about my scoliosis story.
Photo from Scoliosis Awareness Philippines Facebook page
Today I fulfill my promise as yesterday (June 25 is International Scoliosis Awareness Day) on Amanda’s invitation, I was on stage at the Philippine Rehabilitation Institute to tell those who came for free scoliosis screening, MY scoliosis story.
Below is a transcript of my speech, though I added a bit more on stage, connecting with what other speakers talked about earlier in the afternoon.
I was diagnosed at 12 years old. I am now 44 so I have been living with scoliosis for more than three decades. In my grade school graduation picture, my right shoulder was lower than my left. I was listing to one side. My mother noticed this and often told me to straighten up. My mother worked in the World Health Organization. One day in the course of her work, she came across information about scoliosis. It struck her that maybe I had it. When she went home that day, she asked me to bend down in front of her. True enough, she saw my back hump.
I went in for a consultation at the National Orthopedic Hospital. I underwent a series of X-rays which confirmed that I had scoliosis. I remember distinctly that my mother cried. I was scared. The doctor told me, do you know that only beautiful women get scoliosis? Lorna Tolentino. Zsa Zsa Padilla. I was amused but not reassured. I wondered if any smart women had scoliosis, or any doctors had it. Because I wanted to be a doctor.
I was told to exercise and go swimming. I had X-rays every 6 months to monitor my S curve. My curve worsened within a year. The doctor said I needed to wear a brace, a Milwaukee Yamamoto brace. It had a chin rest. I will never forget how they made a cast of my body so the technician could make my brace. The bandages with the plaster of Paris wound around my body like an Egyptian mummy, and the terror of having it cut open to take off the mold.
It was difficult to wear the brace in our tropical climate. I only took it off when I took a bath. It was a challenge to wear a brace during my teen years but my parents encouraged me to embrace my identity, that being different was okay. It helped that I did well in school so no one actually bullied me.
The first time I wore my brace in high school, many thought I’d had an accident. I got tired of explaining to everyone what scoliosis was. They couldn’t believe I had to wear the brace for years. Eventually, they got tired of asking.
I was told I needed to wear the brace until my spine stopped growing and the bones matured. I wore the brace for five years – from age 13 until 18. So yes, my debut also meant freedom from the brace. I joined the CAT in my senior year at high school and even became an officer. No one stopped me because in my brace I could stand straighter than any of them and march stiffly like a real soldier.
I took up my premed course in UP Diliman were there was no required school uniform. With my brace, there was no hope of blending in so I decided to stand out instead. I wore big dangling earrings. I covered my chin rest with colored bandannas to match my outfit or my socks. At one point, I needed braces on my teeth too. I went for it and began calling myself the Brace Beauty. Also Beauty, Brain and Brace. I finished BS Biology magna cum laude.
Although I no longer had to wear my brace in medical school, long hours standing while working in the hospital was hard on my back. I also couldn’t exercise regularly. I went on to specialize in internal medicine and endocrinology. I was very busy so I pretty much only remembered my scoliosis when I went shopping for clothes. I would get irked when the sales lady would insist on a smaller size as I always got a size bigger to accommodate my back hump. I wore mostly empire cut dresses which became annoying too when I gained weight. I would sometimes get asked if I was pregnant on checking in for a flight or while on duty by patients because they thought I was in a maternity dress. I became so skilled at hiding my scoliosis under my clothes, standing in a certain way to hide my curvature in pictures that whenever I wore more fitting clothes, friends would tap me on the shoulder telling me my scoliosis was getting worse when it actually wasn’t!
My scoliosis worsened for real after I had my two sons. During the pregnancy and after giving birth, I had really bad back pain that I needed to undergo physical therapy. I contemplated surgery but I had a busy medical practice and didn’t want to take time off from work.
Several years back I began to have shooting pains down my left leg. An MRI revealed that I had nerve impingement from my scoliosis. I went into physical therapy again, but stopped once my pain was relieved. Luckily, I found a Pilates studio near my house, through a Facebook ad. I now go to Pilates twice a week. I’ve been going regularly for two years. I no longer suffer from back pain. My instructor says my core is getting stronger. I wish I had started years back. I intend to do Pilates for the rest of my life.
I don’t know where you are on your scoliosis journey. I just started on my ideas notebook. On the first page, I have quotes to inspire me. Let me share a few.
Life is tough my darling, but so are you. Do what they think you can’t do. When was the last time you did something for the first time? You don’t have to have it all figured out to move forward. Don’t count the days, make the days count.
Thanks to Amanda for inviting me here today, and making this day count. Thank you for listening to my story.
Looking back, I realized that scoliosis screening was also not available at school even then. Would I have been diagnosed earlier if my mother had not known about scoliosis? Amanda says we need statistics to convince the Department of Health that screening for scoliosis at school is needed. Others with scoliosis are speaking up.
Photo from Scoliosis Awareness Philippines Facebook page
Thanks again Amanda for an afternoon well spent.
Truly inspiring.I hope my daughter will embrace ur story.she was diagnosed with scoliosis when she was also 12. She’s wearing d milwaukee brace still. What ur mother felt then was experienced by me.I can’t believe but I prayed for His guidance. We also hv semi annual check up yearly @ cebu doc.I hope my daughter will be inspired by ur story as u inspired us parents.thank u for sharing ur story.my daughter is now in grade 10.
Thank you! I wish you and your daughter the best.
good afternoon doc, i’m armie from manila i just wanna ask if there is any treatment regarding scoliosis because i notice that my hips is not proportion and my left shoulder sometimes warmth.
I don’t know what the new treatments now would be. Personally though, I’ve been doing Pilates and it helps with my back pain.
I thank God every day that my school had a scoliosis screening cuz without that screening I would be paralyzed today. My school found it even tho it was so far along that I went straight to surgery it still saved my life, in a sense. I agree that it needs to be mandatory in schools. That couple of hours it took to check the kids could save a lot of kids from suffering later in life but I also think it needs to be done before 6th grade, when it was done when I was in school, cuz if mine had been caught sooner it would have been a much easier road of recovery for me. My daughter was diagnosed 1 day before her 9th birthday only because I screened her at home all the time and not because of a school screening, which is why I think the kids should be screened earlier. Some parents don’t know what to look for so it’s up to others to educate them by doing these screenings and sending home information to the parents. My daughter has had several eye screenings at school so why is a scoop screening not as important????? I think it is just as if not more important. Screen our kids, it doesn’t take much to get it done. I would actually volunteer to help screen children if we had some way of doing so and that way it wouldn’t cost as much money to get the screening done. Glad to read this and hope it makes a difference, let me know if there’s anything I can do to help.
Thanks Pamela! If you can like the Scoliosis Awareness Philippines page, that’s where Amanda will be posting updates on activities you can help with.
Hi Doc. I was moved by your story. My daughter is 12 years old, just started her Yamamoto brace and i have been browsing about success stories from scolio victims. She’s crying almost everyday, feeling bad about having it and less-confident of herself. Can i visit you in your clinic? I would like to have a talk with you and i plan to bring my daughter along with me. Thank you in advance
Hi May! I hope your daughter is okay. It does take a while to adjust to a brace. My clinic contact details are at the bottom of the page.
i also had a 11 yrs.old daughter diagnosed with 18.1 degrees thoracic dextroscoliosis,i know nothing about this,her doctors did not advice her of anything,what to do or what to take,instead he told me to wait one more year ,and let her xray again,i am worried about her condition…
The curve might worsen when she hits her growth spurt. Maybe that’s why they said to wait one more year because she’s not yet in puberty. It is best to seek a second opinion.
My daughter is wearing a Yamamoto brace for 2 yrs now.she’s turning 14 this march and the ortho who recommended that she wear braces told us that she’ll be wearing it for 4 yrs.I came across an article about the spinecor brace.I’ve learned about its price and we cnt afford it.I want to have a consult with you regarding her condition.any clinic on Saturdays? Thank you so much
Hi, I am not an orthopedic surgeon so I really cannot advise you on this. I also don’t have personal experience with the spinecor brace.
Hello .. What a inspiring story .My son was diagnosed with scoliosis when he was 13, Inverted S 69-deg and 33-deg., my son is now in grade 11. He’s wearing boston brace pero parang walang nababago,kaya naghahanap kami ng mga Forum na ganito at nagbabaka sakali na may malaman kami kung saan may cheaper scoliosis surgery.. thank u for sharing ur story.
May I ask po how severe is your curve when you were 12? And did the milwaukee brace lessened it? Thank you po. I also have scoliosis and I stopped wearing my brace because it was so hard to breathe at times
I had an S curve and I think the lumbar curve was around 40 degrees. I had to wear a brace to stop the curve from worsening as exercise and PT then was not able to stop the progression.