Ehlers-Danlos Syndrome World

09/04/2026

I‘ve probably probably posted this before. It’s probably about 17 years old. I can’t imagine how much worse it must be now. My arms and legs were going numb a lot in the heat. So hopefully it was more related to POTs or dysautonomia. I feel so abandoned by the medical system with imaging like this. The tech showed it to me right away and said your neck isnt supposed to look like that.

It’s never been addressed despite years of neck pain, spasm, dizziness, headaches, throat pain that could be nerve related, headaches, tmj. I guess I briefly had a collar but it didn’t help and it didn’t investigate or try to work on getting the curve back.
Yoga teachers would say “just roll a towel up and put it under your neck”. But who has time to lay flat on the floor, plus there is a pest problem where I live. I don’t feel comfortable doing floor exercises anymore.

I applied for MAID, not because I want to die. But because for particularly situation, unless it improves significantly before next summer. It would be really cruel to force me to tolerate another 30C apartment that doesn’t even cool down over night.
If you know you know. My only fear is the people fear mongering about the process that it isn’t actually painless.

Another concern is because I have some missing medical documents, and the nurse hasn’t spelled my name correctly yet. I’m unsure what to expect. I’m not in a rush, but over the last three or four years it’s gone past “a rough patch”.

I’m still trying but as some of you may be able to relate. When too many things are hitting from too many different directions there can come a point when enough is enough. I don’t see a lot of hope in my personal life situation.

That doesn’t mean that other people don’t have different options or opportunities.

I hope everyone will keep fighting for each others rights and stick together. I really want people to see the big picture, that this is also directly related to how society views illness, especially lesser known types, not just EDS. And the connection it has to disability rights, woman’s health, and intersectionality.

09/04/2026

I bought silicon tape and gel to put on my chin. The wound (chin lac)had opened after I showered and healed over too much by the time I went back to er to see if it could be stitched. (Constant housing crisis) I probably would have noticed but the apartment was flooding from upstairs, among other things.

The glue wasn’t supposed to come out the way it did, not from what I understood them explain at first, but I didn’t get a clear answer. It was really difficult choice to go back in.

I was let in way before other people who looked in much worse shape. I assume because it was a follow up to an acute injury to begin with.

All they did was put steri-tape and give me some to take, which was helpful, because it was still bleeding a week later.

The scar is healing thick, which is better than thin. But it’s still pink. Hopefully it will fade over time.

This is the second time my skin hasn’t co-operated with being closed up. I had some stitches done by a good plastic surgeon once for a biopsy on my face and had no issues. Some Drs probably don’t know how to choose the best closure types unless they have a lot of experience.

Or is the majority of people’s skin really like sewing leather shoes together? Or gluing a knock off purse? There seems to be no interest in the delicate or nuances of individual people.

I’m not the only fragile person. And it may sound like an oxymoron but you have to be really strong to move through the world with a fragile body.

09/02/2026

https://www.facebook.com/share/v/1ScyUV7tRf/?mibextid=wwXIfr

09/01/2026

It’s wild how disgusting governments are all over the world (CANADA in particular is just quiet about it) not only ignoring disabled people’s need for supports and levelling the playing field. It’s an attack and out right eugenics.

I hope everyone has seen Complicated?

The movie confirmed one of my biggest problems with treatment issues and Drs. With EDS. Which was that we often DO RESPOND to treatment without testing positive from traditional testing methods, they cannot explain it. And my Dr has been telling me this all along, which is why I have been so privileged to be treated for my arthritis, without rheumatoid factor showing up. I do respond to treatment. That’s why I am terrified what will happen when he retires shortly.

https://www.chronicpainpartners.com/complicated-the-must-watch-documentary-on-ehlers-danlos-syndrome/

This is the heartbreaking reality how people think of us. Hard pill to swallow but until we accept it and start pushing back nothing will change. There are no laws protecting us. Only people with money can leave for treatment. And even they are not necessarily given help soon enough.



















https://www.facebook.com/share/v/1TCcGa6i4B/?mibextid=wwXIfr

08/26/2026

I have a question for anyone else that has had a chin lac. There was a pharmacy mix up and a discontinued beta blocker was added to my pill pack. I already have low blood pressure and am prone to pre-syncope episodes. So anyway they are relatively mild. But this time after taking metroprelol and Sotolol together for a few days without realizing, I got up in the middle of the night which I rarely do and somehow ended up hitting a wall at the other end of my apartment. I woke up and blood was pouring from somewhere and I had to get to the bathroom to figure out it was my chin. Anyway so they glued it together on the 19th and I just properly showered today and it doesn’t look like it’s healing very well. I am going to post a few photos. TRIGGER WARNING. Mildly Gruesome chin gash in the comments. Any thoughts? Should I go back? Should anything else be done to reduce scarring?

08/12/2026

https://www.facebook.com/share/r/192PZuWje4/?mibextid=wwXIfr

07/12/2026

Meta asked if I wanted to get verified but it’s over 60$ a month. That’s a lot. They always try to sell things based on fear, it’s like insurance. They must make a killing.

07/02/2026

Just something to think about for those who are sensitive and considering tattoos

https://www.facebook.com/share/r/1PFEmtqZbW/?mibextid=wwXIfr

06/28/2026

Hey everyone,

I know politics isn’t everyone’s thing, and I don’t often post about it here. But when disability rights are affected, I feel it’s important to speak up.

I’m sharing the letter below for anyone in Alberta who wishes to respectfully express their concerns about recent changes to disability supports.

No matter the diagnosis—whether it’s hEDS, MS, a genetic condition, mental illness, paralysis, or a disability acquired through illness, injury, or aging—we are all connected. Disability is part of the human experience, and any one of us could need support someday.

Accommodation is not special treatment. It is what allows people to participate more equally in society. Every person’s abilities exist on a spectrum, and that spectrum can change from day to day. Needing support does not diminish someone’s worth or dignity.

We are ALL connected. Disability is not a niche issue—it is part of the human experience. Whether through genetics, illness, injury, aging, or mental health, any one of us could need support someday.

Thank you for taking a moment to read the letter. Feel free to make it your own, tailor it how you’d prefer. That may make it stronger. Also if you are from Alberta and know of other addresses it should be sent out to, by all means share those for people.

[email protected]

Dear Premier Danielle Smith,

I don’t know you personally, but the more I learn about your government’s treatment of disabled Albertans, the harder I find it to understand how these policies have been allowed to continue despite the fear and suffering they have caused.
The decision to require many Albertans to reapply for disability assistance has created profound anxiety among people who already face extraordinary challenges. Instead of providing stability, these changes have left many fearing for their financial security, housing, and future.

Public reporting has documented the death of Bruce Johnson of Empress, Alberta, who, in a message before taking his own life, wrote that the impending transition from AISH to ADAP and the anxiety surrounding it had pushed him beyond what he could bear. Whether or not one accepts every aspect of his conclusion, no government should ignore such a warning or the fear these changes have created within the disability community. (Global News⁠)

On behalf of those being forced to reapply for AISH, disabled Albertans who are homeless, seniors living in poverty, and those struggling in underfunded institutions, I urge you to stop these harmful changes before more people are put at risk.

A compassionate society is judged by how it treats its most vulnerable citizens. I ask you to restore stability, dignity, and security to Alberta’s disability support system.

Sincerely

[email protected]

06/24/2026

For old time sake ♥️

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