Hi š Iām Jayde. I may look ānormalā, but I have multiple severe and rare disabilities that impact me daily. I first felt intense pain at 3 years old. What started as pediatric migraines turned into a diagnosis of severe Idiopathic Scoliosis and Kyphoscoliosis, my twisted spine with three sharp curves. āļø
Scoliosis is much more than a curvature of the spine - it impacts your entire body and centra
l nervous system. Misfiring messages from your brain to the rest of your body. Surgeons and specialists poked and prodded me for years. When the severity of my curves progressed far too quickly for usual idiopathic cases, it forced my orthopaedic doctor to dig deeper. But when no neurological or cardio cause was found, the idiopathic label stuck and the reason for my rapidly twisting spine remained unknown. š
It was managed by many major surgeries and a horribly hard slab of plastic I wore 22 hours a day 7 days a week for a decade; the Wilmington brace I coined my āplastic prisonā. When I was 9, my symptoms intensified. I was diagnosed with a neurological disorder (Chiari Malformation) where part of the brain tissue falls into the spinal cord. This caused syringomyelia in my cervical spine, a syrinx that manifested into painfully wild migraines and loss of feeling in my arms and legs. It was considered a comorbid condition of my scoliosis. The outcome was brain surgery to remove my C1 vertebrae, allowing my spinal fluid to flow more freely. At 15 years old, I swapped my plastic prison for titanium rods. It took two separate major surgeries to straighten the 95 and 65-degree curves. First, a thoracoplasty from the right side of my body and second, a fusion and bone graft from the back which fused my spine from T3-L4. š„
While the surgeries were successful (albeit with complications), my curves are still severe - 60, 55 and 45 degrees. More than 30 years later, the missing piece of the puzzle was revealed. The one in a million to my story. š
It took three specialists: a physiotherapist, a rheumatologist and a geneticist to piece together everything. Combined with my progressing symptoms, a backlog of medical history that speaks volumes and a diagnosis of a connective issue disorder in my family, we finally found the āwhyā behind everything. There is no cure for Scoliosis or Ehlers-Danlos Syndrome, but I believe that with support, research, and awareness, we can raise awareness of the conditions and how they can interconnect and manage the symptoms as best as possible.
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***About Scoliosis***
Scoliosis is a condition that affects 2-3% of the population, an abnormal curvature of the spine (normally in an S or C shape). If left untreated, severe scoliosis can lead to serious spine, chest, pelvis, and heart and lung damage. Severe scoliosis affects:
- Lung & heart function
- Bone development
- Chronic pain
- The bodyās nutritional resources
- Neurological symptoms - muscle weakness & nerve pain etc
- Hormones
- Digestive & metabolism system
- Posture, balance & body alignment
Scoliosis is a multifactorial disorder that requires holistic, specific treatment and research. With idiopathic scoliosis, it's unknown who will get it, why they will get it or if it will progress and how far. There is no cure.
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***Scoliosis Awareness ā Early Detection, Early Correction***
In the last 15 years, I have been fairly closed off about my condition and the past battles I have faced with it. Not because I was embarrassed or upset about it, but simply because it was the easiest thing to do and for me, the 'best' way to deal with it all. When I had my last major surgery at the age of 15 and after a very long recovery, I became a new person and was more than happy to push aside who I once was to finally have my shot at living a somewhat normal life. In 2014, I started to witness first hand how my story could impact other peopleās livesāthose in the lead-up to their surgery, those fighting the same battle, and their families. Scoliosis affects everyone in different ways, and for the first time in my life, I found how my situation could influence these stories positively and how I could share an understanding with people in the same boat as me or similar. Scoliosis can also be a comorbidity of Ehlers-Danlos Syndrome - a group of 13 heritable connective tissue disorders that manifest into a wide range of symptoms affecting your body from head to toe. We didn't know the link between Scoliosis and EDS until more than 30 years after my initial diagnosis. Ehlers-Danlos is one of the most misunderstood and under diagnosed conditions in the history of modern medicine. On average, it takes 14 years to be diagnosed.
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I will be completing a swim (50 laps) on the weekend of September 27th 2014 to raise funds (this date represents my operation anniversary). All funds raised will be donated to The Scoliosis Kids of Australia for awareness of the condition, early detection and research for a cure and medical treatment through Edith Cowan University. ALL FUNDS RAISED GO TO SCOLIOSIS KIDS AUSTRALIA FOR EARLY DETECTION, RESEARCH AND AWARENESS OF SCOLIOSIS.
**Note: Swim has been completed and the fundraiser finished as of 6/10/14. We raised over $2k and completed the swim in under 40 minutes. Funds raised were given directly to the nominated organisation, Scoliosis Kids Australia. I will be keeping this page open to continue to raise awareness of scoliosis and provide support for those going through their own scoliosis or invisible and rare disability battles. Please feel free to contact me directly or share the page.**
