Aliza
My name is Aliza I am 33 years old. Prior to my onset of corneal neuralgia I travelled the world, I worked in events and had a strong desire to eventually get involved in a non-profit or maybe politics. My community would describe me as a go-getter, positive and bright-eyed. I have an undergraduate degree in Psychology and Communications from Carleton University. I have always wanted to help others and contribute to continue making Canada one of the best countries in the world.
However, in February 2022 I was diagnosed with ocular neuropathic pain (otherwise known as cornea neuralgia or CN). My onset of symptoms started in July 2021 and the 6 months before I was able to finally get a diagnosis felt like a lifetime of distress.
I was bounced around from doctor to doctor (including GPs, “dry eye” specialists, world-renowned ophthalmologists, rheumatologists, naturopaths, my own previous laser eye surgeon, and neuro-ophthalmologists at hospitals) only to be given a number of at home dry eye therapies that were not working and doctors that didn’t believe me. I remember one that said, “Sometimes people just have more extreme dry eye symptoms and we don’t know why” or “Try meditating”. I was in 10/10 pain. Morning to night my eyes felt like they had either gone through a wind tunnel, someone had poured acid on them, sand had been lodged under my eyelid, or someone stabbed a pencil in my eye which caused pressure headaches and sent shocks through my head, face and down my neck every time I blinked.
The pain was constant.
I continued to advocate for myself but in times it was too difficult. I turned to my mom and said, “Mum, people don’t live like this, I can’t live like this. I don’t want to die, but if this pain persists I don’t see what else someone is to do.” CN is an isolating experience full of bad news and lost hope.
But the reality of the situation is that there is help. There are solutions and Canada’s doctors are not widely trained in it. Our doctors are telling people to go home and put a hot compress on their eyes for what is nerve damage. Our doctors are misdiagnosing and completely dismissing patients, going as far as calling their symptoms psychosomatic. What it does is forces the patient to become their own doctor and filter the information, try their own methods, read the internet, fly around the world to see different doctors and try to get any answers to bring some sanity to their day. It’s the most distressful thing I’ve ever experienced in my life. Everything in my life came to a halt – I no longer wanted a relationship, I didn’t want kids, I quit my job, my whole personality changed. I was angry, sad, jealous, and anxious. I spent over $25,000 in two years searching for answers. Our doctors and our health system failed me.
I urge our provincial health systems today, to strongly consider this application of patients that have bound together to help bring attention to a debilitating condition and not let another Canadian suffer because they can’t get access to the help they need. The condition itself is so painful and spending all your money and/or going into debt is a tipping point.
My journey should not have to be any Canadian’s journey. The technology, research, science and therapies exist and they work. My pain has improved. I am early in my recovery. I am better than I was last year but I still have a long way to go.
I have to think twice about every prescription and if filling it is worth it. All treatments are very expensive. My current approximate monthly cost is below:
-Cyclosporine ($200/month)
-Lotemax ($30/month)
-Timolol S ($55/month)
-Autologous serum drops ($150 a month)
-Hylo/occunox ($65/month)
-Omega 3s ($50/month)
-Tumeric pills ($40/month)
-Vitamin B ($40/month)
-Magnesium ($25/month)
I’m spending a total of $655 per month on therapies to get me just to a functioning level of life. This doesn’t include out-of-town doctor’s visits, in-country optometrists’ visits, flights, hotels, follow ups, a pain therapist (weekly at $320/session), and odd items such as hot compresses, dry ice to transport my drops, etc. Keeping in mind, many patients who suffer from this condition cannot work.
I beg our provincial health insurance plans to please consider helping Canadians cover these costs and I thank you for your time in reading our application. Our health system helps so many people every day and I hope we always strive to make it as inclusive, effective, and up-to-date of a system as it can be.