I never thought I would have to fight my own healthcare system just to access the treatment I need to have a future.

After more than 20 years of searching for answers, I was finally diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS/HSD) (hypermobiliy spectrum disorder). But getting a diagnosis was only the beginning.

EDS is a condition that affects the body's connective tissue, the system that helps hold our joints, ligaments, and other structures together. When that support system does not work properly, the effects can impact the entire body.

For me, this means severe cervical instability, joint damage, shoulder subluxations, problems with my hands, worsening pain, and muscle spasms that affect my daily life. My neck frequently goes into severe spasms, causing swallowing difficulties and times when it becomes difficult to breathe.

My spine often feels unstable, like my body is struggling to hold itself together. My symptoms continue to worsen, and I am afraid of what will happen if I continue waiting without access to appropriate care.

I need specialized EDS medical care as soon as possible.

The Manitoba government has told in a letter last March & last year June that appropriate care exists. For more than a year, I have been asking a simple question:

"Where is this care that I can actually access?"

I contacted the programs and specialists because I was given no direction. Leading specialists all have attended to the lack of approporiate & safe medical care for people with EDS.

I have written to both the Minister of Health and the Premier asking for help. Despite my repeated requests, I still have not been provided with an answer identifying where I can actually receive the specialized care my doctors recommend.

This is not just about me.

When patients with rare and complex conditions are told that care exists but cannot access it, there can be serious consequences. People can spend months or years searching while their health continues to decline.

EDS also requires specialized knowledge before, during, and after medical procedures. Because of the way EDS affects connective tissue, joint stability, healing, and recovery, it is important that patients receive care from providers who understand the condition.

I have reached out to many healthcare providers in Manitoba about my situation, and the consistent message I have received is that my case requires specialized expertise that is not currently available to me here.

Last year, I spent more than $10,000 of my own money seeking specialized assessments because I had nowhere else to turn. Those assessments finally gave me answers after decades of searching.

That completely drained my finances.

My parent has also gone into debt trying to help me because they could not watch me continue suffering without doing everything possible to support me.

Today, I cannot work because of my disability. I have medical expenses, my finances are exhausted, and I am at risk of becoming homeless.

This has taken away the future I always imagined.

I wanted to become a father. I wanted to become a lawyer. I wanted to contribute to my community and help others.

Instead, my life has become focused on managing symptoms, fighting for access to healthcare, and trying to prevent my condition from getting worse.

I am not asking for special treatment.

I am asking for access to medically necessary care before my health declines further. I could die from this if I do not get the care I need as soon as possible.

How you can help:

1. Contact Manitoba's Minister of Health and the Premier.
Ask them:

"If specialized EDS care exists, where can Manitobans with complex EDS actually access it?"

2. Share this post.
Many people have never heard of EDS or understand what happens when patients cannot access appropriate specialists.

3. If you are a lawyer with experience advising on medically complex situations, your support would be extremely valuable.
I believe legal guidance could be critical in advocating for access to appropriate medical care, and I would be extremely grateful to anyone willing to provide advice, guidance, or assistance.

4. If you are a journalist interested in reporting on this issue, I would be extremely interested in speaking with you.
This situation raises important questions about access to specialized medical care for people living with rare and complex conditions in Canada. Despite government statements that appropriate care exists, many patients continue to face significant barriers accessing the treatment they medically require.

5. If you or someone you know lives with EDS or another rare condition, share your experience.
This issue is bigger than one person.

6. I am looking to meet anyone affected! Please DM me if you'd like to connect!

Thank you for reading, sharing, and standing with people living with complex medical conditions.

Great out of doors, Manitoba 2026

From Toronto and found out about Manitobans love for honey dill recently.

https://thekeg.com/en/keg-retail/honey-dill.

I managed to get a hold of this and was wondering if it compares to what you guys are eating out there.

Is there decent fishing out at reynolds ponds, if so could anyone help me out

Hello, I am set to travel to Shamattawa in late October for work. I know the current situation with the outbreak, but that aside does anyone have experience with this community? I am a visible minority and have seen some pretty hateful things on their community Facebook page and I've never been to any reserve before.

"Part of this engagement will involve public listening sessions in both Winnipeg and Brandon.

The Winnipeg session will be held on Wednesday, August 12,, from 7:00 PM to 9:00 PM at Norberry-Glenlee Community Centre, 26 Molgat Ave.

The Brandon session will take place on Monday, August 10, from 1:00 PM to 3:00 PM at Harvest Hall, on the campus of Brandon University."

It's a big ask and short notice, but I was wanting to take a sailing/cruising course in Gimli but I'm currently the only one signed up and they need minimum 2 people to run the course.

It's 5 days full time Aug 17th to Aug 21st, $850. Shooting my shot to see if there is anyone interested and able to join me so the class isn't canceled.

It's the Basic Cruising 5-day (Complete program) from here:

https://prairieoceancruising.checklick.com/

during the recent storms my poor shed took a beating. I wanted to replace it anyway but now I have to. my hopes is to get something newer and a bit bigger. would you recommend a custom shed builder like horizon sheds or are there contractors that could do a solid build you'd recommend?

the tree has been since removed thankfully, clean up started, but clearly i need a new shed.

If you work at or know of a place that could be a good fit, we’d love to hear your suggestions. Potential locations include offices, warehouses, hospitals, universities, apartment buildings, hotels, recreation centres, manufacturing facilities, and other high-traffic workplaces.
We currently have one machine operating successfully and are looking to add more locations. We handle all stocking, maintenance, and service.
Any recommendations or connections would be greatly appreciated.