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#ehlersdanlossyndrome — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #ehlersdanlossyndrome, aggregated by home.social.

  1. CARMARTHEN: ‘Having Jeff means people recognise I might need help’ — how a Red Fox Labrador gave a mum her life back after long Covid and heart failure

    Emma Reardon had learned to live with Ehlers-Danlos Syndrome — a lifelong connective tissue disorder — while holding down a full-time career and raising her child in Carmarthen.

    Then the pandemic hit. She was struck down with long Covid, and later diagnosed with heart failure. The triple blow left the 53-year-old — who sometimes uses a wheelchair or mobility scooter — struggling to hold on to the life she had built.

    “My illness zapped me of my confidence and stopped me in my tracks,” said Emma, a former social care manager who now works part-time as director of a non-profit autism organisation. “I went from being someone who was full-time employed and a full-time mum to someone who’s now working part time because of my health.”

    “A combination of all these conditions meant I couldn’t live the lifestyle I had before,” she added.

    She got her Red Fox Labrador, Jeff, as a six-month-old pup — partly to feel less isolated. It was the beginning of something neither of them knew they needed.

    “He did start getting me out, and I realised how much he loved to work,” she said.

    After spotting a Support Dogs advert on social media in late 2024, Emma applied to the national charity, which trains and provides assistance dogs free of charge for people with autism, epilepsy and physical conditions. Jeff spent a month at their training centre, cared for by volunteer foster families on evenings and weekends.

    Emma then joined him for two weeks of handler training, and the pair spent the following nine months putting everything into practice back home in Wales.

    Jeff is now trained to act as Emma’s personal carer around the clock. He accompanies her to work and hospital appointments, presses access buttons and opens doors — a particular help when Emma is using her wheelchair or scooter — and retrieves dropped items including her mobile phone.

    “He picks things up I drop, because bending over is difficult for me,” said Emma. “And he helps me on and off with my jacket and my socks and gloves.”

    But the impact goes well beyond the practical tasks. Emma’s disability is not always visible to others — and Jeff changes that.

    “Sometimes people assume I’m Jeff’s trainer, because my disability isn’t visible,” she said. “So having Jeff means people do recognise that I might need a bit of space, or a bit of help.”

    She said simply having him by her side gives her a confidence she had lost entirely.

    “Those are the tasks he’s trained in, but more than that, just having him with me means when I go out I just feel more confident,” she said. “It’s two-fold — I could look like I’m fine when I’m not fine.”

    Emma described the experience of having Jeff trained as life-changing. “It’s got me out and about. It’s got me taking part in life much more and feeling much less defined by my illness or disability,” she said. “Having Jeff, it’s about what I can do now, whereas before, it was about lots of things I found I couldn’t do. I can’t thank Support Dogs enough.” Support Dogs relies entirely on voluntary donations to provide its services free of charge. Anyone who would like to find out more or support the charity can visit supportdogs.org.uk.

    Related stories from Swansea Bay News

    Long Covid stories from Swansea Bay News
    All our coverage of long Covid and its impact on people across south-west Wales.

    Pets and animals stories from Swansea Bay News
    The latest pet and animal stories from across the region.

    #assistanceDog #Charity #dog #EhlersDanlosSyndrome #LongCOVID #RedFoxLabrador
  2. Oh my goodness, I'm so nervous. I have a very important doctor's appointment in a half an hour that I really NEED to go well. I'd appreciate it if anyone sends me good vibes/wishes me luck/whatever. Aaaaa!!! 😖
    #chronicpain #chronicillness #NEISvoid #ehlersdanlossyndrome #hEDS

  3. #3goodthings #threegoodthings

    1. I got tickets to see Social Distortion/Descendents at the Stone Pony in September.

    2. I made my husband watch Airheads. He's from LA so of course he's like, "I've been to all of those locations." OK COOL THANKS.

    3. The doctor who deals with my Ehlers-Danlos Syndrome recommended that I microdose a GLP-1 for the heart and musculoskeletal benefits. That comes tomorrow.

    #music #punk #ehlersdanlossyndrome #movies

  4. Answered an email, then tried to make it a hat trick* by calling the allergist, but for some reason that office is always closed when I call. It was farking 330!

    *next time I'll go for the Gordie Howe hat trick, which is a goal, an assist, and a fight.

    #mentalhealth #eds #ehlersdanlossyndrome #hockey

  5. I've been dreading calling the dentist because I had to ask him a Hard Question.

    No one answered, and I was so mad. I finally got the damn guts to call and ask Hard Question, but then, ah ha!

    I said to myself I says, "You can ask Hard Question to not a human, but a machine."

    Message left! Hard Question asked! I can cross this off my to list from like last farking year!

    #mentalhealth #ehlersdanlossyndrome #eds

  6. Today the new functional medicine doctor I'm seeing described me as being in "multi-systems failure" and I laughed my entire ass off because she is *completely* correct.

    So we're doing some tests.

    Thankfully, she is conversant in EDS. Actually, she was able to speak more intelligently to me about EDS than anyone except the EDS doctor.

    I'm happy.

    #ehlersdanlossyndrome #chronicillness #adhd

  7. OH BOY DO I LOVE BEING DISABLED

    Finding emergency specialized care days before Christmas is nearly impossible. And I'm in PAIN.

    I have an appointment tomorrow with the wrong kind of practitioner but he may be able to help. He might make it worse. I guess we'll see!

    #chronicillness #disability #ehlersdanlossyndrome

  8. I keep forgetting to mention that my doctor diagnosed me with #EhlersDanlosSyndrome this week.

    I've suspected for a while, and my massage therapist has been sure for a couple of years.

    Like my #ADHD diagnosis two years ago, this explains SO much.

    Including the frequent athletic injuries. And the nonstop back pain. The tennis elbow. The ankle sprains, inguinal ligament strains, neurocardiogenic syncope, costochondritis, premature ventricular contractions, memory problems....

    1/2

  9. This week I started #75hard because I need some movement and structure in my life.

    However, the idea of doing two major workouts in a day is stupid. Anyone familiar with exercise science will tell you that you need downtime.

    So I decided to make each one a very easy workout.

    It ain't poppin'.

    I have #ehlersdanlossyndrome so even that isn't working for me.

    We're changing it to one easy workout, one yoga session. And no sessions on the weekends.

    Because yall, I feel like shit right now!

  10. Diagnosis: Hypermobile Ehlers-Danlos Syndrome

    After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

    Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

     

    Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

    Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

    Final close up.

    https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

    #art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

  11. Diagnosis: Hypermobile Ehlers-Danlos Syndrome

    After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

    Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

     

    Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

    Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

    Final close up.

    https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

    #art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

  12. Diagnosis: Hypermobile Ehlers-Danlos Syndrome

    After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

    Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

     

    Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

    Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

    Final close up.

    https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

    #art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

  13. Diagnosis: Hypermobile Ehlers-Danlos Syndrome

    After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

    Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

     

    Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

    Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

    Final close up.

    https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

    #art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

  14. Diagnosis: Hypermobile Ehlers-Danlos Syndrome

    After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

    Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

     

    Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

    Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

    Final close up.

    https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

    #art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

  15. Fuck any doctor that charges almost a thousand dollars for an hour and a half (and one portal message) of their time, ESPECIALLY when that doctor deals with a rare disability that isn't all that rare.

    Newsflash assholes: almost no one, percentage-wise, can afford that.

    I can. I absolutely can. And I'm still violently pissed off about it.

    #ehlersdanlossyndrome

  16. I just said something about myself that I would N E V E R say about someone else. WTF. DO BETTER DICKHEAD.

    Yeah I need to work on positive self talk.

    #mentalhealth #chronicillness #EDS #ehlersdanlossyndrome #ADHD

  17. CW: Cat and Chronic Pain.

    The woman is in pain, so I've been here on duty doing healing purrs for almost an hour now. 👨‍⚕️🚑 #SleepyBoy

    #MedicCat #OrangeCat #Fedicats #CatsOfMastodon #cat #GingerCat #CatRescue #ParamediCat #ChronicPainManagement #EhlersDanlosSyndrome :blobcatscience:

  18. CW: Cat and Chronic Pain.

    The woman is in pain, so I've been here on duty doing healing purrs for almost an hour now. 👨‍⚕️🚑 #SleepyBoy

    #MedicCat #OrangeCat #Fedicats #CatsOfMastodon #cat #GingerCat #CatRescue #ParamediCat #ChronicPainManagement #EhlersDanlosSyndrome :blobcatscience:

  19. CW: Cat and Chronic Pain.

    The woman is in pain, so I've been here on duty doing healing purrs for almost an hour now. 👨‍⚕️🚑 #SleepyBoy

    #MedicCat #OrangeCat #Fedicats #CatsOfMastodon #cat #GingerCat #CatRescue #ParamediCat #ChronicPainManagement #EhlersDanlosSyndrome :blobcatscience:

  20. CW: Cat and Chronic Pain.

    The woman is in pain, so I've been here on duty doing healing purrs for almost an hour now. 👨‍⚕️🚑 #SleepyBoy

    #MedicCat #OrangeCat #Fedicats #CatsOfMastodon #cat #GingerCat #CatRescue #ParamediCat #ChronicPainManagement #EhlersDanlosSyndrome :blobcatscience:

  21. CW: Cat and Chronic Pain.

    The woman is in pain, so I've been here on duty doing healing purrs for almost an hour now. 👨‍⚕️🚑 #SleepyBoy

    #MedicCat #OrangeCat #Fedicats #CatsOfMastodon #cat #GingerCat #CatRescue #ParamediCat #ChronicPainManagement #EhlersDanlosSyndrome :blobcatscience: