Ehlers-Danlos Syndrome World

Ehlers-Danlos Syndrome World Ehlers-Danlos Syndrome awareness.

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?

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.

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]

For old time sake ♥️
06/24/2026

For old time sake ♥️

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

06/19/2026

Hey EDS’rs, and everyone in between. I wanted to say hi. I think it’s been a while since I posted. Hope everyone is doing okay. I have been locked out of my accounts by Facebook for FRAUD of all things, which is funny since I can’t even barely lie to safe my life. Except that one x-ray that got my EDS dx ball rolling.

So so tired all the time, doesn’t matter how much sleep I do manage to get. I don’t know if others have this problem but sometimes when I do manage to get enough sleep I almost feel rested like I can breathe, and think maybe today will get something done.

I get as far as making something to eat barely and lose my appetite on the first bite. Force it down anyway, so I can take mouthfuls of medication. Then have IBS, get light headed. And gaslight myself to keep going, till I realize I have to lay back down. Because the only time I don’t feel starved of oxygen, is if I am laying down.

I would not be choosing to do this in a million years. But it seems like people still think it’s a choice or it must be nice to lay around. And to think that I am still doing better than many others I know with varying degrees of illness much worse than mine.

hEDS along with other disability is such a broad cultural issue. I am following the cuts Dannielle Smith is making in Alberta, and my heart aches for everyone being forced off AISH, and having to re-apply.

Please feel free to say whatever you like about that here. The whole world should know how Canada treats their disabled, chronically ill, and elderly. The vast majority of people in power appear to be uneducable, apathetic, even cruel, or evil? Regardless the intent, the outcome is hurting a lot of people.

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West Vancouver, BC

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