Imagine how terrifying it would be to be jolted awake by the most severe pain of your life to realize that you cannot feel your legs or walk. Then, imagine choking on a sip of water because you are going into total respiratory failure. Now, consider how devastating it would be for your family to watch you being rushed into intensive care to be placed on a ventilator to breathe for you.
These were only a few of the traumatic events mere hours before I became totally paralysed and lapsed into a coma. For months, my survival hung in the balance as a team of critical care doctors and nurses worked tirelessly to regulate my heart rate, blood pressure, body temperature and liver and kidney function.
It was a tremendous shock for everyone to learn that I had contracted the Chikungunya Virus which triggered Guillain-Barré Syndrome (GBS). It was an even more severe shock to receive an equally distressing diagnosis of bilateral Neurogenic Heterotopic Ossification (NHO) of the hips 6 months later.
Occurring in only 6% of all GBS patients, NHO is a rare complication that causes the formation and growth of bone within the soft tissue and muscle surrounding a joint, resulting in stiffness or immobility.
Image: healthy hip joints compared to my joints encased in the bone resulting from NHO
At stage 4, the bone growth in my hip joints has caused a complete lack of movement. My legs are locked in place with less than 4” of space between my knees and upper thighs and my body/back is permanently bent at a 45° angle. Even with ongoing physical therapy, these restrictions hinder the most basic task of daily living and cause a tremendous amount of lower back pain and muscle spasms.
The sudden onset and crippling effects of GBS & NHO have been devastating but there exists an alternative to lifelong wheelchair dependency and chronic, intense pain. Hip surgery is the next step if I am to fully recover from these conditions but I cannot do it without your help….kindly contribute to my medical fund and be the one to make a difference!
Thank you for your support!