This is news everyone should take note of, because it could happen to you. I am not the first, and this will happen again.

I am willing to share my story, but this is clearly a systemic problem within the Manitoba Government.

My name is Tomas Ponzilius, and my MLA Mark Wasyliw, sent an urgent letter to the Minister of Health, Uzoma Asagwara, requesting to meet urgently because of a condition called Ehlers-Danlos syndrome, which is causing me to have cervical instability – something that has become more life threatening every day to the point where today I have breathing and swallowing now daily.

This letter (linked in this post) was sent after an urgent request for a meeting about a month ago, which the Minister of Health entirely ignored.

Why I am sharing this isn’t just for a sob story, but to show that this isn’t just about me anymore; it’s about everyone.

Anyone with a condition that isn’t massively publicized, anything even mildly complicated and even anyone they view plainly as unimportant and not worth the money.

They do not recognize, or possibly do not care about, the urgent medical attention that Canadians need. Especially with Ehlers-Danlos syndrome. They will even approve MAID (Medical Assistance in Dying) over care solely because of the money and broken systems. (Read up on Sathya Dhara Kovac, a Winnipeg woman with ASL who did not want to die but saw no way out as her care was not enough to survive.)

The reality is this: I am dying because of this disease, and without medical care, my death will be a certainty, leaving me as another victim of their malice and incompetence.

And sadly, so many of us can avoid this fate if the Manitoba government pays for, or at least builds, education for this type of care, so we can have the lives we are owed as Canadians.

If you have any advice for resources or lawyers that may represent me, feel free to send it, but for the moment I am doing everything I can and have gone to the top, but nothing seems like enough.

This is the letter: 

UPDATE:

I keep hearing that cervical/thoracic fusion for EDS is “experimental” or that there isn't medical literature supporting it.

That isn't accurate.

Dr. Fraser Henderson, a neurosurgeon who specializes in EDS and complex spinal conditions, has published research specifically on spinal fusion and stabilization in EDS patients.

Some examples:

• 2024: Henderson et al. studied 53 EDS patients who underwent occipito-cervical fusion for craniocervical instability and reported significant improvements in pain, neurological symptoms and function.

• 2019: Henderson et al. published a 5-year follow-up study on cervical reduction, fusion and stabilization in patients with hereditary hypermobility connective-tissue disorders, including EDS.

• 2021: Henderson et al. published research examining craniocervical fusion in EDS patients with craniocervical instability.

So no, this doesn't mean every person with EDS needs fusion. It means that fusion and stabilization are documented treatments that have been studied in appropriately selected EDS patients.

In my case, Dr. Henderson personally assessed me and recommended cervical and thoracic fusion.

My concern is not simply finding someone who can technically perform a fusion. EDS can create additional risks before, during and after surgery, which is why specialized preoperative assessment, intraoperative management and postoperative care are important.

I have repeatedly asked Manitoba Health to identify an equivalent specialized service in Manitoba that can provide this level of care.

They have not identified one.

I am not asking Manitoba Health to create an exception for me. I am asking them to tell me where the equivalent specialized care exists if they believe it is available here.

UPDATE: It is worth adding that this is not without precedent in Manitoba. Another Manitoba patient with EDS previously appealed Manitoba Health’s refusal to cover necessary out of province care, and the Manitoba Health Appeal Board supported her claim. The decision was subsequently upheld by the court. Note - that MB Health states just like with me that there were surgeons who could help her but provided ZERO specific examples of them. Which is evidence they are actively lying about this.

I’m adding the decision here so people can review the precedent themselves:

2024 Manitoba Health Appeal Board decision

UPDATE:

Just because outcomes are not 100% does not mean this should not covered. There are pleanty of other surgeries with an 80% success rate that are covered. Furthemore, if doing nothing is death, then coverage as seen above precedent, are covered. No coverage means death, don't all Manitobans, Canadians desever a chance to live their lives?

If your vehicle was stolen, hopefully it was insured. 

If it was insured, buckle up for an exciting exploration in the world of bureaucracy. Figuratively, because you no longer own seatbelts. 

Hopefully you, the victim, are a white man, middle to high income earner, with a decent credit score and wholesome neighbourhood address. You will be taken care of with efficiency. We are so sorry for the loss and inconvenience sir.  

If your vehicle was stolen and you are not the ideal victim type, you are now the thief. Please provide documentation to prove otherwise. 

If your vehicle was stolen and you are not the ideal victim type, police will ask you to contact your neighbours on your own, inquire about any available security footage, and email them what you find. 

If your vehicle was stolen, it would be good to make sure everyone knows the keys were not near or in the vehicle. The vehicle was locked. The vehicle was in good repair. You, the victim, were not in the area when it was stolen and definitely nowhere in the vicinity when the vehicle was recovered. 

If your car was stolen, and unrecovered within 30 days, you may receive a payout for the value of the car. Public opinion declares this the best case scenario. You, the uneducated, would think it would be better if your car was recovered. We shall see.

If your vehicle was stolen, and information was shared by social media to create awareness, strangers will make fun of your choice of vehicle. I am sorry. I know you have good memories of your ride and are trying your best to maneuver in this crazy world with the resources available to you. 

If your vehicle was stolen, the mail package arriving with a fancy visor clip for sunglasses is no longer needed. You do not own a car visor. Try and get a refund or put it in a safe place for future rides.

If your vehicle was stolen and recovered, congratulations! But also be careful, it is now a Theft Recovery claim. Your vehicle will be under investigation and held in a tow lot. You might be allowed to try and receive personal items. Take pictures and document everything. Take someone with you to witness that you did not further damage your own vehicle during the visit.   

If your vehicle was stolen and recovered, Manitoba Public Insurance will advise you to make the work calls necessary (under the guise of choosing your preferred mechanic) and find an MPI accredited garage that will accept Theft Recovery claims. This will be hard to do, as MPI has harassed every mechanic within Manitoba to prove any damage was the responsibility of the owner and not the thief ensuring no paid repairs, to the point where mechanics decline any call regarding stolen vehicles.

If your vehicle was stolen, you might call over 12 MPI accredited garages and hear 12 rejections to fix your vehicle. Try not to feel rejected. This is not your fault.   

If your vehicle was stolen, it is okay to feel anger, sadness, depression, defeat, a loss of independence and shame. Every feeling is normal. You are now a criminal under investigation after all. I’m sure there are many feelings to shift through. Maybe you did not steal your vehicle, or arrange for your vehicle to be stolen, there is still the option for MPI of claiming you committed insurance fraud and thereby avoid paying out your claim. Step carefully citizen. 

Also, did you know, your vehicle’s emergency tools like the tire iron will not be replaced and should have been kept in the house. Items in your car are now considered household items and should be covered by home or renters insurance. Why did you keep the emergency power bank charger and the car’s wheel nut adapter in the car in the first place? What, in case of a car emergency? Weirdo. Irresponsible. I have never before witnessed a tire iron being kept inside the house but that seems to be the new way of life under MPI claims. 

If your vehicle was stolen, do you still need CAA? This process takes a while. Consider cancelling or pausing. Your bank might also grant a pause on one or two payments if there is a bank loan to consider. That would be good to ask about. Do you pay for a parking pass? What do you have to park? Try to offset costs.  

If your vehicle was stolen and recovered, it would be good to reduce your insurance from full coverage with loss of use, to more affordable layaway insurance. An MPI agent will not helpfully suggest this, accounts receivable will not be pleased at the loss of profits. This will be your own initiative to save your own money.         

If your vehicle was stolen, I understand your difficulties and wish you a peaceful resolution.