#ehlersdanlos This runs in my family & it’s worth knowing about.
Woman accused of faking symptoms of debilitating illness dies aged 33 | The Independent https://www.independent.co.uk/news/health/ehlers-danlos-syndrome-stephanie-aston-death-b2405284.html

@janetlogan good luck, I’m trying as well, but not really having much luck. #ChronicPain #fibromyalgia #painsomnia #PsA
#EhlersDanlos

My ex-partner recently told me that he didn’t know how I live with #EhlersDanlos Syndrome, that he didn’t think he could do it.

I’m not strong in spite of my disabilities, I’m strong because of them. There are many kinds of strength. #DisabilityPrideMonth reflections: #Disability #SelfLove #hEDS https://t.co/98a9GbHftR

I'm a good little zebra and ordered replacement knee braces today. My knees are scarily unstable, and my old braces disappeared longer ago than I want to admit.

Good knee braces are not cheap, but they do definitely make me a lot more stable when I have to be on my feet all day.

#EDS #EhlersDanlos #ChronicIllness #Dysautonomia #Spoonie

A question for #longcovid, #ehlersdanlos and #chronicillness types who benefit from #melatonin in the UK:

I'm in Germany. I use delayed release 2mg melatonin ordered from Spain. Brought some to my gran and mum and they found it beneficial, but the doctors won't prescribe it - instead suggesting far more dodgy Amitriptyline, despite the fact melatonin issues are common in people over 55 anyway, especially with chronic illness.

So... How do you #UK people get your melatonin? Experience to share?

@EarthOne Your profile pic looks like #EhlersDanlos!

https://nkvsspsundaycomics.thecomicseries.com/comics/273/

Please give yourself space

#ComicsMonkey #NKVSSP #disability #SundayVibes #webcomics #webcomicchat #comicbookhour #comics #DisabilityPrideMonth #WeMatter #EhlersDanlos #pain #management #gremlins #human #love #life #SundayBrunch #sundaymorning #vibecheck

A thing I am repeatedly noticing is that a lot of stuff that's geared towards the public in terms of like "making your life suck less" and whatever else - including stuff that's based on therapy modalities - 100% does not take disability or neurodivergence into account *at all*.

Even my beloved ACT resources really need a therapist or a lot of self-awareness to locate where a person's actual capacity is.

1/

#neurodivergent #disability #goals #therapy #ADHD #Bipolar #EhlersDanlos

My older kid is turning 16 soon, and he mentioned today that he wanted a weighted blanket for his birthday.

Which is kind of cool, because I have a weighted blanket here that I can't use (it makes my ribs hurt and sublux too much - Ehlers Danlos is fun).

So I just gave it to him today to try out. It's a nice one too, with good ventilation and glass beads.

Makes me happy to see it go to good use instead of getting given to the thrift store.

#Today #EhlersDanlos #Happy

@adamjcook I guess there are a few things I had saved there that I wish I could still access. In particular a conversation with the researcher who identified an association between #EhlersDanlos, #Autism, and #ADHD. Loved that direct connection to researchers. But we'll rebuild that here soon enough.

@feather1952 I've had X rays. They tell me my spine is deteriorating, but shrug and give me exercise pamphlets when I ask what can be done about it. I'm all for exercise, but that's not going to fix my vertebrae. They also can't see muscle or tendon problems with an X ray, and I have those too.

I'm not officially diagnosed, but my doctor agrees with me that I probably have #EhlersDanlos. And I definitely have scoliosis. I think I also have something weird about my muscles that makes them abnormally strong but they get tired fast and start to shake or cramp really easily. I'm just weird all over...

I hope this is more than just words. I hope this project helps break down some of the barriers and helps patients, clinicians, and researchers work together.

Long Covid Alliance website:

https://longcovidalliance.org/

#LongCovid #MEcfs #POTS #Dysautonomia #MCAS #EhlersDanlos #Lyme #SolveME

Press release:

"Long COVID Alliance Announces Initiative to Strengthen Partnerships Amongst Diverse Disease Communities to Address Infection-Associated Chronic Conditions"

Project has $77,000 grant from CDC Foundation’s Infection-Associated Chronic Conditions Understanding and Engagement (ICUE) program

https://solvecfs.org/wp-content/uploads/2023/06/Final-Press-Release-IACCPAC-Initiative.pdf

#LongCovid #MEcfs #POTS #Dysautonomia #MCAS #EhlersDanlos #Lyme

Dr. Shawn Baker shares his talk on The Benefits of a Carnivore Lifestyle. - YouTube
https://www.youtube.com/watch?v=3yCIOgOyJe8

#carnivore #improvement #health #mentalHealth #benefits #ptsd #gastrointestinal #osteoarthritis #rheumatoidArthritis #psoriaticArthritis #skinConditions #psoriasis #eczema #tourettesSyndrome #geneticDisorders #EhlersDanlos

I would like to kvetch mildly that only I could get completely chilled in a 74F dry house. Dysautonomia is a pain in my everything.

#EhlersDanlos #EDS #ChronicIllness #dysautnomia

[Automatic repost https://twitter.com/dystobot/status/1660417730959294465]

RT @HeartBravoFl: I explained I was not able to do that. She told me well she needed to scan the fern. No offer to get someone to help me. My daughter was with me but she can not carry the fern. She has her own #invisbleillness cont. 2 #EhlersDanlos #Dystonia

I’ve diligently worked my entire life to cultivate the grace with which I was not born. Only in granting myself compassion did I truly find it.

Learn more about my journey with #EhlersDanlos and #hypermobility in today’s @Huffingtonpost. I hope it helps someone else find an answer and perhaps hope for the future.

https://www.huffpost.com/entry/broken-bones-ehlers-danlos-syndrome_n_644052d2e4b039ec4e7c66c2

#EhlersDanlosSyndrome #HypermobileEhlersDanlosSyndrome #ChronicPain

Does everyone know about Reynaud's syndrome?

It is poor circulation in fingertips and toes, extremities.

For me it's in my fingertips.
They turn white, cold and numb.

Many people who have Ehlers Danlos, EDS, also experience this.

Look it up if you get white, icy fingertips that take a long time to warm up.

Very important to WEAR GLOVES when it's chilly.

Extended loss of circulation can lead to permanent damage.

#EDS #ReynaudsSyndrome #ActuallyAutistic #IcyFingers #EhlersDanlos

RT @celine_vr
Journée de sensibilisation à l’autisme au Campus du Ceria, Anderlecht, ce dimanche 16 avril de 11 à 19h. Avec notamment une conférence sur le lien entre #autisme et #EhlersDanlos, à 15h.

seeking #disabled advice: my #AFOs are mad sweaty when it's hot. are there any particular knee socks that help anyone deal with summer? regular cotton is miserable and chafey. Should i just hit my calves with antiperspirant? that seems like it might be bad for you.

#disability #orthotics #EDS #EhlersDanlos