Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy).

#eds #hsd #heds #marfan

🥳 🏥 💵
Thanks to everyone who made a gift in memory of my daughter Jadzia to the Marfan Foundation. We're looking forward to the St. Louis Walk for Victory tomorrow!

As of Saturday morning, we've raised $1,860, which blows me away!

Meanwhile, the overall STL campaign is just $1,500 shy of its goal of $100,000.

Would help push us past $100K? You can give a gift in memory of Jadzia here:
https://give.marfan.org/team/777133

#marfan #walkforvictory #fundraiser #stl #stlouis #medicalresearch

https://marfan.org/conference/

I am not there this year, as I am at home with the kids instead of us all going to this year's #Marfan conference in Atlanta. It's been a busy summer!

Probably a long shot here, but is anyone out in the Fediverse in Atlanta, GA (US) for it? #veds #marfan #lds #marfanconf #vedsmovement

Please don't hesitate to private message me. My spouse is there, and they do an astonishing job sharing their skills in #mentalhealth and supporting the community. I am happy to help connect people with support there on the virtual front.

Likewise, if you're not there but need someone to talk to, I am open myself as well. Also happy to help connect you with this growing and mighty community for support!

🎥 #Documentary #ChronicallyIgnored

Only a few days left until June 20th. I would be very grateful for sharing, so that as many people as possible can be reached! Thank you so much for your support!

A Wake-Up Call To Politics, Medicine & Research

#POTS #SmallFiber #SIBO #Autoimmunity #MCAS #FQAD #FQToxicity #FlagylToxicity #EDS #hEDS #Marfan #CCI #LongCovid #LongLyme #VacInjury #LongList #LongTragedy

Film Link here:
🎥https://vimeo.com/ondemand/chronicallyignored

Ich habe heute auf den social media Kanälen, wo die entsprechenden Orgas sind (Insta, FB, X, Bluesky), die Patient*innenorgas und Research Foundations für #MEcfs um folgendes gebeten:

"Benennt und erwähnt auf euren Websites die sogenannten "Komorbiditäten" und Co-Faktoren vieler Patient*innen mit ME-Diagnose. Dazu gehören #EDS, #hEDS, #Marfan, #POTS, #SFN, #MCAS, #CCI #FQAD, #Lyme, #MCS und mehr.
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#naME_it!

Questo videoclip è un tributo speciale nato in ricordo del nostro caro amico Matteo Lorenzet, conosciuto da tutti come @Sciabbolone o semplicemente Sciabb.

Si tratta di una reinterpretazione unica e affettuosa del celebre brano "Because I Got High" di Afroman, trasformata per l’occasione in "Beacuse I Got SCIABB".

Il progetto è nato dalla collaborazione di tanti amici e amiche, uniti dall'affetto per Matteo e dalla voglia di celebrare la sua memoria con allegria e leggerezza. Grazie a un crowdfunding di successo, siamo riusciti a portare a compimento il progetto e a devolvere parte del ricavato all’Associazione J Peter Onlus, che si occupa di dare supporto psicologico ed economico alle persone affette dalla sindrome di Marfan e alle loro famiglie.

Questo è il nostro modo per ricordare Matteo con la gioia e il sorriso che è sempre riuscito a donarci. Grazie a tutti coloro che hanno partecipato e a chi lo guarderà, continuando a far vivere il ricordo di un amico speciale ❤️

#MatteoLorenzet #BecauseIGotHigh #BeacusaIGotSCIABB #Afroman #lanciano #marfan #NowPlaying

Because i got Sciabb ❤️ @Sciabbolone ❤️

https://youtu.be/4H0c8kknaoM?si=xQM1NyyuVir6wADV

Paganini’s Hands

#Marfan syndrome is a genetic disorder changes a person’s connective tissue, often making them unusually tall with lengthened limbs and long, thin fingers. Observers of Paganini frequently commented on his unique hands. In 1831, his personal physician wrote, “Paganini’s hand is not larger than normal; but because all its parts are so stretchable, it can double its reach. For example, without changing the position of the hand, he is able to bend the first joints..