Hi Winnipeg. I want to share what is happening to me because you don't need to have Ehlers-Danlos Syndrome to understand what I'm asking for.

Imagine waking up every day not knowing whether your body will cooperate.

Imagine that something as simple as walking to the kitchen, taking a shower, swallowing food, sitting at a desk, or trying to sleep could trigger pain, muscle spasms, or another part of your body becoming unstable.

That is what life with EDS/HSD can be like.

I have Ehlers-Danlos Syndrome (EDS/HSD), a condition that affects the connective tissue that holds your body together.

The way I try to explain it is to imagine your body as a house.

Most people live in a wooden house. It can get damaged and need repairs, but the basic structure is designed to hold together.

Living with EDS can feel like living in a house made of clay that is constantly collapsing. You can keep trying to repair it, but the underlying structure isn't providing the stability it should.

And imagine that the materials inside that house are fragile too. For me, it can feel like there is a razor inside my body cutting and irritating my insides. My muscles can lock up and spasm. My throat can seize up and make swallowing difficult. My joints and spine can become unstable.

So when I say I'm in pain, I'm not talking about having a bad day.

I'm talking about 20 years of pain.

I've lost my childhood. I've lost my teenage years. I've lost my 20s. And now I'm watching my 30s disappear.

I've had to give up things that most people don't think twice about: working normally, going to school normally, making plans, being independent, and simply being able to trust that my body will get me through the day.

Think about what your life would look like if your body couldn't be relied on.

That's the reality I'm living with.

Right now, I have spinal instability and need specialized care that I have been trying to access outside Manitoba. My condition can have serious and potentially life-threatening consequences, which is why I'm fighting so hard to get appropriate care.

There are an estimated 125,000 Canadians living with Ehlers-Danlos Syndromes. This isn't just an issue affecting a handful of people.

And this is where I need people who don't have EDS to understand why I'm speaking out.

It has now been over six weeks and I still have not received a response from the Minister of Health regarding my out-of-province referral.

My MLA sent a letter requesting an urgent meeting with the Minister of Health three weeks ago.

There has still been no answer.

While I'm waiting, my health continues to be a serious concern. My finances have also reached a point where I may not have anywhere to live next month because I simply cannot keep up with my medical expenses and basic living costs.

Imagine if this were you.

Imagine being sick, knowing you need specialized medical care, doing everything you're told to do, going through the proper channels, involving your elected representative, and then being left waiting for an answer while your health and finances continue to deteriorate.

You wouldn't want special treatment.

You would want someone to answer you.

And that's what I'm asking for.

Everyone deserves access to medically necessary healthcare, regardless of whether their condition is common, rare, straightforward, or complicated.

What you can do

1. Share this post.
You may not have EDS, but someone you know might. Help me reach people who need to understand this issue.

2. Contact your MLA.
Ask them what Manitoba is doing to ensure people with EDS can access medically necessary specialized care when it isn't available here.

3. Contact the Minister of Health.
Ask why my out-of-province referral has gone unanswered for over six weeks and why my MLA's urgent meeting request has gone unanswered for three weeks.

4. Talk about EDS.
The more people understand what this condition can do to someone's life, the harder it becomes for people living with it to be invisible.

You don't have to understand exactly what it's like to live in my body.

5. If you are a lawyer, please consider helping.

This matter is extremely complex & I am in desprete need of help to ensure that my health needs are met and the Manitoban government cannot hurt anyone in a similar situation like this again.

Just imagine what it would feel like if your own body became the thing you could no longer rely on.

That's what I'm fighting every day.

I'm fighting for my health, my housing, my future, and ultimately the chance to have a life instead of spending it fighting for access to one.

I’m going to keep fighting. I just wish I didn't have to fight this hard to get the care I need.

Hey everyone! 33M here in Victoria and looking to meet some new people and make some friends.

I’m hoping to get outside this week and was wondering if anyone would be interested in joining me for some tide pooling, fishing, and/or hiking.

I’m pretty easygoing and would be happy to explore somewhere new, check out some tide pools, do some fishing, or find a good trail. It would be nice to have some company and meet some new people along the way!

If you’re interested in any of those, send me a message and we can figure something out. 😊

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.

Hey everyone,

Thought I'd put myself out there.

I'm a 33 year old guy in Victoria looking to meet some other neurodivergent people and hopefully make some genuine friendships. I have NVLD (non-verbal learning disorder)/VSDD, ADHD, Auditory Processing Disorder, and EDS (Ehlers Danlos Syndrome). I can be a bit quiet when I first meet people, but once I'm comfortable I'm pretty easygoing and enjoy getting to know people on a deeper level.

I'm into fishing, being outdoors, road trips, exploring new places, checking out coffee shops, and just hanging out. I also enjoy talking about disability advocacy, psychology, politics, science, and pretty much anything interesting. I'm always happy to learn something new or have a good conversation.

I've been dealing with some significant health issues, so I'm a bit limited in what I can do right now, but I'd still love to meet kind, understanding people who are interested in real friendships. I'd even be up to taking a ferry to Vancouver to hang out.

Whether it's chatting online, grabbing a coffee when I'm feeling up to it, going fishing, or just talking about life, I'd be happy to connect. I'm going fishing tomorrow and would like to hang out with someone.

If you think we'd get along, feel free to send me a message or leave a comment!

Hey I'm a 33M, I'm looking to go out tomorrow morning, message me if you'd like to go shore fishing or don't mind someone tagging along in a boat! I'm from Winnipeg hoping to meet people here and enjoy the summer!

Hey I'll be in Victoria for a while and am looking to meet new people!

I'm a UofManitoba student in Social Work. I care a lot about advocacy, especally for those with disabilites.

I like a lot of stuff, including hiking, fishing, gaming etc.

I'm hoping to get out fishing in the next few days and maybe do some hiking.

I like to really experience the highlights of this area

Hey I'll be in Victoria for a while and am looking to meet new people!

I'm a UofManitoba student in Social Work. I care a lot about advocacy, especally for those with disabilites.

I like a lot of stuff, including hiking, fishing, gaming, the rest.

I'm hoping to get out fishing in the next few days and maybe do some hiking.

I like to really experience the highlights of this area.

DM me if you're interested!

Calling all UBC students with Ehlers-Danlos Syndrome (EDS), family members, caregivers, healthcare students, and anyone who wants to help!

What is EDS?

Ehlers-Danlos Syndrome (EDS) is a genetic condition that affects the body's connective tissue—the "glue" that supports your joints, muscles, skin, blood vessels, and organs.

People with EDS may experience:

• Frequent joint dislocations or injuries
• Chronic pain
• Extreme fatigue
• Digestive problems
• Difficulty with everyday activities

For some, symptoms are mild. For others, EDS can be life-changing.

We're starting a Canadian EDS awareness and advocacy project to improve awareness, education, access to healthcare, and support for people living with EDS.

Many people with EDS spend years trying to get diagnosed or find the right care. This can make school incredibly difficult. Students may miss classes, reduce their course load, or even leave university because of pain, fatigue, injuries, and a lack of medical support.

I'm one of those students. I had to leave my program because of my health. I'm dealing with swallowing and breathing problems, and my shoulders dislocate regularly.

Like every student, we want to study, build careers, spend time with friends, stay active, and enjoy university life. We just need better support to make that possible.

If you have EDS, know someone who does, are studying healthcare, or want to support this initiative, I'd love to connect.

Leave a comment or send me a message.

Together, we can raise awareness, strengthen our community, and advocate for better care for people living with EDS across Canada.

Hi

Message me if you are interested!
Looking forward to meeting you all :)

Anyone want to go fishing next week?

I'm from Winnipeg and will be coming down for a week then going to Victoria for a couple of months to see some friends! If you'd be up to going fishing, I have a spare rod but still need to buy some tackle and other things.

Calling all people with Ehlers-Danlos Syndrome (EDS), family members, caregivers, healthcare professionals, and supporters!

What is EDS?

EDS is a genetic condition that affects the body's connective tissue, which helps hold joints, muscles, skin, blood vessels, and organs together. People with EDS can experience joint dislocations, chronic pain, severe fatigue, injuries, digestive problems, and many other health issues. While some people have milder symptoms, others become significantly disabled and require ongoing medical care and support.

We are starting a Canadian EDS awareness and advocacy project to improve recognition, education, access to care, and support for people living with EDS.

Many people with EDS struggle to find the healthcare they need. In Manitoba, we have been told that care exists for EDS, but many patients are still unable to find these services or get clear information about where to go.

This affects every part of life. Students may miss classes, reduce their course loads, or leave school because of pain, fatigue, injuries, and a lack of treatment. Many adults struggle to work or are forced to leave their jobs. Some people become isolated from friends, family, and their communities as their health worsens.

I've had to drop out of my program. I am having problems swallowing and breathing. My shoulders are popping out of their sockets constantly.

Like everyone else, we want the chance to live full lives. We want to go skating, fishing, spend time with friends and family, go to school, build careers, and participate in our communities. Instead, many people with EDS are left suffering without the care and support they need.

Our goal is to bring people together, share experiences, identify gaps in care, and work toward real solutions. We believe no one should be left behind.

Whether you have EDS, support someone who does, work in healthcare, or simply want to help, we would like to connect with you.

If you are interested in getting involved or learning more, please leave a comment or send me a message.

Together, we can raise awareness, build a stronger community, and advocate for better support for people living with EDS across Canada.

I'm looking to form a fishing group, anyone want to join? I've got a couple of rods and some basic gear but no car.

See the question - are there any buffets worth going to? Whats the cost? thanks!

I'll be heading down to victoria and wondering if a non student can eat at the dinning hall? Would I have access to the buffet?

Hey r/Winnipeg,

I am looking to create a video project about living with Ehlers Danlos Syndrome (EDS), including severe chronic pain, joint instability, disability, and the barriers many people face accessing appropriate care.

I am currently looking for a Winnipeg based camera operator, videographer, or cinematographer who may be interested in helping with this project or future disability advocacy content. The goal is to create professional and honest video content that helps humanize the realities of complex and often invisible disabilities.

Experience with documentary style filming, interviews, advocacy related work, or storytelling would be especially appreciated.

If anyone is interested or knows someone local who may be a good fit, please feel free to comment or message me.

This is for vollunteers.

Thank you!

I refuse to be treated like a third class citizen by this instituation anylonger due to my disabilities.

I ramble. I repeat myself. I move awkwardly. I miss social cues. I take longer to learn and I ask more questions.

That’s disability.

I have Nonverbal Learning Disorder and Ehlers-Danlos Syndrome. I’m in constant spine pain. I have servere shoulder pain. I need about a dozen operations.The way I sit, stand, and move is me trying to function through that.

So when I look uncomfortable or “off”, that’s not a choice.

I refuse to apologize if that makes anymore feel "uncomfortable" as some have accused me of. I also can't make eye connect either. I refuse to apologize for that either.

Also yes, I am 32m, no I did not chose to come here because I wanted at my age, but was delayed constantly due to EDS and NVLD. And guess what? Because of these diseases I have to withdraw from some of my courses because I need about a dozen surgeries to stabalize.

What is a choice is how people treat me.

This hasn’t just come from faculty or staff. It’s been students too.

Students have talked about me behind my back like I’m the problem. Some have actively slandered me online. That’s not harmless. That’s people turning disability traits into character attacks. This is slander. And when this happens when services are being delivered they become human rights breaches.

Call it what it is: ableism.

And the system backs it up.

At the University of Manitoba, if you’re not fast, socially fluent, and able to perform competence the “right” way, you fall behind. Even with accommodations, the expectation is still that I adapt to a system that was never built for me. And even then accommodations seem to up for debate - where is the human rights code when undue hardship & reasonable accommodation is forgotten?

So I end up apologizing. Constantly.

For asking questions. For needing time. For not getting it right away. For missing cues. For looking like I’m in pain.

I’m tired of apologizing for existing.

I’m also tired of having to push everything to the point of human rights complaints just to be taken seriously. That shouldn’t be what it takes to get basic access.

This has a cost.

Psychologically, it wears you down. Being talked about, misunderstood, and constantly judged for things you can’t control.

Physically, it makes everything worse. More stress, more pain, less function.

And I’m still expected to keep up like nothing’s wrong.

If your idea of a “good student” excludes people like me, that’s not neutral.

That’s systemic ableism.

And it’s happening here.

So here’s what I’m doing about it.

I’m starting a social media advocacy project focused on disability rights, real experiences of ableism, and pushing for structural change, not just surface-level “awareness.” I want to document what this actually looks like in universities and beyond, and create a space where disabled people don’t have to filter themselves to be taken seriously.

I am also intending on filing a human rights complaint with the Manitoba Human Rights Commission and Manitoba's Disability Secretariat. I am more than willing to help any of you file some too. I am also creating an advocacy service for those like myself who the system does not servce.

I am tired.

I did not sign up for this.

I just wanted to get my degree, make some friends and network. Is that to unreasonable to ask?

A lifetime of endless bigtroy full of discussions of equity that almost never include those with disabilities.

I know the world does not value us but you are vaulable.

And you don't deserve to be treated like a third-class citizen anylonger.

If you’ve experienced this, I want to hear from you.

If you’re an ally, I want you paying attention and I want you to support us.

And if you actually want to help push for change instead of just talking about it, connect with me.

Because clearly, the system isn’t going to fix itself.

This is to all undergraduate and graduate students, even facility and staff who feel forgotten and left behind by a system that does not value you.