Ehlers-Danlos Syndrome World

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Ehlers-Danlos Syndrome World Ehlers-Danlos Syndrome awareness.

09/24/2026
09/18/2026

I think this is beautifully expressed, by this content creator.
For those whose personal lives have been deeply effected and harmed by government policies, I hope this helps continue to inspire more of us to keep speaking out about this cruelty, both in Canada and the U.S. It puts disabled individuals at higher risk of DV, it creates barriers to marriage and long term co-habitation. It’s unfair due to lack of accommodation or acceptance of people with disabilities in the workplace. Visible, and invisible like hEDS, or other conditions.

https://www.facebook.com/share/v/1Hk7pXqAbA/?mibextid=wwXIfr

09/17/2026

People readily agree that a dog needs adequate food, safe shelter, medical care, temperature control, and freedom from prolonged distress. Yet disabled people can be denied those same basics and then blamed for failing to cope.

That double standard is profoundly dehumanizing.

This is in no way meant to be a competition, but it reminded me of a woman that wrote a comment about having EDS and sai...
09/13/2026

This is in no way meant to be a competition, but it reminded me of a woman that wrote a comment about having EDS and said her rare cancer that resulted in a double mastectomy, wasn’t as hard having to live with hEDS. I obviously wouldn’t know, but I have wondered about su***de rates because of the relentless character attacks on people with undiagnosed illnesses like hEDS. I definitely had a couple “cries for help” I can’t say how serious I was. But I knew something was terribly wrong.
And no amount of effort or diet, or Drs could give me any sort of answer. In fact trying to get help made it worse. I collected awful anti-depressants that made me sicker. Anxiety and heart palpitations wasn’t just in my head. Those medications messed with my relationship too. And the lack medical care has much more damaging effects on the relationships of the patient with their families. Then the family members think it must not be that bad, or it must be laziness. Then people don’t understand why councilling doesn’t fix the fatigue. Psychiatrists will keep trying to fix hEDS fatigue even with a dx, I have found. They have insisted anxiety and depression is what causes fatigue without letting me know that they have any understanding of Ehlers Danlos Syndrome. Don’t they know how tired it can make us?

This is an another reason I used feel so strongly early diagnosis was important.

I am so exhausted trying to teach people how important this all is.

https://www.instagram.com/reel/DdMM9dfxe8D/?stkn=YXNxeDQwMWsxZGNq

09/12/2026

Managing chronic conditions like hEDS and dysautonomia, or POTs, and of course less rare and more rare zebras, can be isolating. But you don’t have go it all alone. If you had a small win or found a tool that helped you get through this week. Feel free to drop a comment, and keep creating community with others who understand. If you feel like venting or expressing your frustration about whatever that is welcome too. I always hoped this is a safe place to share your experience without having to mask it, or dumb it down. 🙏🌈❤️‍🩹

I have not thanked everyone who still follows my page in a while. Much gratitude to everyone, I really appreciate your patience, as I navigate an uncertain time without clear direction. I am hoping something will fall in place, but sometimes hope is a little scary in case it’s dashed.

Happy September to all, ♥️ I hope everyone has a wonderful Fall season.

Anyone else so sensitive to heat, that 3C drop in temp is almost heavenly relief? I have been supine nearly the entire s...
09/12/2026

Anyone else so sensitive to heat, that 3C drop in temp is almost heavenly relief?

I have been supine nearly the entire summer in between 26-30C all summer. It doesn’t cool off overnight, can’t afford a/c. Regulating temperature has always been difficult but it’s been worse lately. I am glad summer is ending.

It’s mean Drs say hEDS isn’t anything serious. Even if Drs think nothing can be done the least they could do is validate some people suffer co-morbidities, like POTs, Dysautonomia. Sometimes other serious physical complications like pr*****ed organs, and overlap similar to vEDS.

It’s ego, it’s patriarchy, it’s woman’s internalized misogyny, why are so many women Drs also withholding diagnoses? And even HRT? It’s, capitalism , racism, sexism, ableism, classism, fragmented groups of different people, fighting for similar causes. We could all be fighting together. Not just disability justice, but woman’s health, racial bias in medicine, decolonization of medicine itself. It would be benefiting everyone including men to fight for women’s healthcare. Most complex chronic illnesses are in women. We shouldn’t have to beg for healthcare or supports. Especially looking at how badly politicians line their pockets every year with their raises. And cut programs every year. I don’t understand.

I think the name of my page was fitting, since it’s a worldwide cultural issue, how illness and disability is viewed.

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