Create accountLogin

Recent searches

No recent searches

Search options

Only available when logged in.
mastodon.green is one of the many independent Mastodon servers you can use to participate in the fediverse.
Plant trees while you use Mastodon. A server originally for people in the EU, but now open for anyone in the world

Administered by:

Server stats:

1.2K
active users

mastodon.green: AboutProfiles directoryPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.7

#hypermobileEhlersDanlosSyndrome

0 posts0 participants0 posts today
Public *
Inoru

Hey. Help us pay for my new wheelchair? I'm desperately hoping the issues with my current chair are that it's old and battered and possibly needs more in repairs than would be worth it (it's better than NOT having one, don't get me wrong...). But $1,100 (rounded slightly up) is a dear price even if cheaper than we'd ever get anything custom.

We're hoping to pay it off in chunks, since we used a credit card, but. The assurance of *having* the money to pay it off would be awesome - and y'all can say you helped buy my chair! Win/win!

Current goal is at 0/$100

(Unless that's changed literally while I've been typing 🤣)

My cashapp is $Inoru, spouse's CashApp is $ceahhettan and his
Venmo is @/californiummm; ask them for paypal/zelle. Comment wheelchair or a Blue wheelchair emoji with specifically-for-this donations! Any amount helps and I/we appreciate!

<*wiggles in New Wheelchair excitement*>

#crowdfund #crowdfunding #transcrowdfund #transcrowdfunding #disabledcrowdfund #disabledcrowdfunding #deafcrowdfund #deafcrowdfunding #helpfolkslive #HelpFolksLive2025 #mutualaid #MutualAidRequest #moneyhelp #ambulatorywheelchairuser #hEDS #hypermobility #hypermobileEhlersDanlosSyndrome #wheelchairuser #powerchair #wheelchaircrowdfunding #powerchaircrowdfunding #IsThisEnoughHashtags #hashtag

via @camilla

kolektiva.social/@camilla/1137

kolektiva.socialcamilla (@camilla@kolektiva.social)hi everyone! we have a new #MutualAid #MutualAidNeeded #MutualAidRequest #MastodonForHarris #Mastodon4Harris #HelpFolksLive #HelpFolksLive2025. we just replaced @inoru_no_hoshi@blorbo.social's power wheelchair with a new one that'll be here Saturday, for the fun sum of $1093.95 on a credit card, with monthly payments of just under $100. y'all, we bought this on faith and a prayer (and a reserve that will help but can't wholly cover the payments and help us not be crushed by poverty at the same time) because their old power wheelchair is unsafe now. it can't be driven across a curb cut without them ending up in the street, much more severely than my chair does. the motors struggle a good bit of the time. part of them having independence is the power wheelchair, so I'm asking to help us with the price of agency and independence as disabled individuals. as y'all probably know, we're both disabled and neither of us work, and we mostly survive off of the good will and kindness of our close friends and random strangers. goal $0/100 put wheelchair in the comments. CashApp: $ ceahhettan Venmo: @ californiummm ask for PayPal/Zelle.
Public
Sasyecat

I take Omega 3(flaxseed) it makes a huge difference in my breathing.
#HypermobileEhlersDanlosSyndrome
#hEDS
nature.com/articles/s41598-024

NatureImpairment of lung volume perception and breathing control in hypermobile Ehlers-Danlos syndrome - Scientific ReportsBreathing difficulties and exertional dyspnea are frequently reported in hypermobile Ehlers-Danlos syndrome (hEDS); however, they are not clearly explained. An impaired proprioception or the addition of a cognitive task could influence ventilatory control. How can the perception of lung volume be measured? Is lung volume perception impaired in hEDS patients? Is the breathing control impaired during a cognitive task in hEDS patients? A device was developed to assess the accuracy of lung volume perception in patients with hEDS and matched control subjects. In the second step, ventilation was recorded in both groups with and without a cognitive task. Two groups of 19 subjects were included. The accuracy of lung volume perception was significantly (P < 0.01) lower at 30% of inspired vital capacity in patients with hEDS in comparison to the control group, and they showed erratic ventilation (based on spatial and temporal criteria) when performing a cognitive task. These data support the influence of the proprioceptive deficit on ventilatory control in hEDS patients. These elements may help to understand the respiratory manifestations found in hEDS. Future research should focus on this relationship between lung volume perception and ventilation, and could contribute to our understanding of other pathologies or exercise physiology. Trial registration number: ClinicalTrials.gov, NCT05000151.
Continued thread
Public
𝓖𝓲𝓪 𝓜𝓸𝓻𝓪 (she/her)

New research suggests genetic identification for -- .

scitechdaily.com/bending-over-

I have known since 2008 that I have this mutation because it caused such difficulty in my sister's pregnancy. To know that this may be the new diagnostic tool for gives me great hope.

SciTechDailyBending Over Backwards: Vitamin Deficiency’s Surprising Role in Double-Jointedness and EDSScientists have linked hypermobility and related disorders to a folate deficiency caused by a genetic variation, offering new diagnostic methods and treatment possibilities with methylated folate. Tulane University researchers have discovered a possible genetic cause for hypermobility (commonly k
#HSD#Genetics#EhlersDanlosSyndrome
Public *
𝓖𝓲𝓪 𝓜𝓸𝓻𝓪 (she/her)

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 and in today’s @Huffingtonpost. I hope it helps someone else find an answer and perhaps hope for the future.

huffpost.com/entry/broken-bone

HuffPostI've Broken My Ankles, Wrists, Elbows And Jaw Many Times. It Took 15 Years To Find Out Why.By Gia Mora
#EhlersDanlosSyndrome#HypermobileEhlersDanlosSyndrome#ChronicPain
ExploreLive feeds
About