Joint Hypermobility Syndrome

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Joint Hypermobility Syndrome
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Story from Sophia

Sophia Granger – Portland, Oregon

Lost: Her daughter, Ivy (diagnosed at 17, died at 21)

Sophia never imagined ALS in a teenager. Ivy was a track star, glowing with life. The first sign? Slurring. Then a leg that dragged behind. When Ivy couldn’t tie her shoes, they assumed stress, overtraining. But a brutal truth unraveled: Juvenile ALS.

Sophia sat with Ivy in hospital rooms where every other patient had gray hair. She had to explain to doctors, to teachers, to herself — how her teenager was dying.

Ivy begged to go to prom. Sophia found a way — an accessible limo, custom wheelchair gown, and a ventilator battery packed in her purse. Ivy smiled through an oxygen mask, telling her mom, “This is still the best night of my life.”

The next month, she lost the ability to swallow. Sophia stayed up every night listening to machines beep, fearing silence more than sound. Ivy passed in her sleep. Sophia woke up to find her daughter's head tilted, eyes half open, like she was dreaming mid-sentence.

Now, Sophia teaches other caregivers how to hold on — and how to let go.

#AngelmanSyndrome #AutonomicDysfunction #ChronicFatigueSyndrome #GuillainBarreSyndrome #JointHypermobilitySyndrome #MyalgicEncephalomyelitis #Ataxia #PituitaryGlandTumor #ALSLouGehrigsDisease #CerebralPalsy

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Help! My hypermobility in my hands and wrists is unmanageable!!

I am so frustrated and have searched online to no avail as to how to deal with this but my hypermobility in my hands and wrists is causing so many issues with things I want to do (cooking, playing instruments and any other fine motor activities).

What should I be doing? I can't find any devices or anything that seems to help, there doesn't seem to be a way to remedy this and I don't want to give up more things I love to Chronic health problems and I feel like I'm almost there and I can't stand to lose something else--please someone help me!

#HypermobilitySyndrome #EhlersDanlosSyndrome #Hypermobility #handhypermobility #ChronicPain #JointHypermobilitySyndrome #Jointpain #HEDS

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Anybody want to “diagnose” this ?

People with chronic illnesses are good at being professional patients. I have ME/CFS and suspect HSD. I’ve been having this issue for a month now. My eyes swell up and can be anywhere from normal but a little swollen to quite swollen with almost a welt? The skin also peels when the swelling goes down!Which is fun. It affects my eyes and only my eyes. The only thing I can put on it is this calendula olive oil salve I have, but anything else burns for obvious reasons. My first thought was contact dermatitis, but it’s inconsistent enough even when I cut things out that I’m suspecting otherwise. (Cutting out all my skincare and makeup for a while didn’t do basically anything).

In short, anyone have ideas? 😚💗thanks

#ChronicIllness
#MyalgicEncephalomyelitis
#JointHypermobilitySyndrome
#EhlersDanlosSyndrome

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Updated

Spoke with the rehab doctor today. I did not fit the diagnosis criteria for hEDS due to skin qualifications. When I asked about HSD she dodged the question and said that this doesn't mean hypermobility isn't an issue.
My chart current says Polyarthralgia/ Polyarthritis with joint hypermobility. I just keep getting bounced around. Ugh.

#HypermobilitySyndrome #JointHypermobilitySyndrome
#Hypermobilespectrumdisorder

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Just when you think you’ve heard it all…

It’s comments like these that can make a person wonder what it’s like to live in another person’s body. Is swaying a useful suggestion for anyone? Because it certainly wasn’t for someone living with frequent joint injuries and chronic pain.

#EDS #EhlersDanlosSyndrome #ChronicPain #ChronicIllness #JointHypermobilitySyndrome

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#ChronicIllness fighter . Living her best life! Overcomer ! #epilpseywarior Hidden Invisible Autitsc Striped zebra! With a creative mind!

#epilpsey Sezure awareness ; #MentalHealth
Hidden disbalty . Fribomlga warrior #LymeDisease #AspergersSyndrome / autism awareness! ADHD . #OsteogenesisImperfecta { brittle bones/ cognitive tissue disorder} hypersensitivity.
Sensory processing disorder! #JointHypermobilitySyndrome hypermobile Elers Danilo’s syndrome #RsdCrps

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