Mechanical Basis findings are integral to #EDS, #Marfans and other connective tissue disorder and disease patients - and issues like #MCAS and mast cell disorders, dysautonomias like #POTS and #OrthostaticIntolerance
Our second presentation on Mechanical Basis issues: youtu.be/lIK7-mBA7Pc?...
3/6
#sick4sick #heds #pots #marfans #pain #fatigue #longcovid #me #pem #spoonies #sexcoach #eroticeducation #trans #t4t #postop #nonbinary #postpartum #surviving #pleasure #grief
For every journal we sell we donate one to a local cardiology unit. If you’ve had cardiac surgery this journal may be for you. It’s not advice. That’s for your doctor to give. This is a colorful place to keep track of daily vitals.
#Marfans #selfcare #MarfanSyndrome
www.amazon.com/dp/B0DNT8JJGT
A digital drawing of a figure suspended mid-air by bright red threads. They’re holding a floating translucent heart in their hands.
It’s #REDS4VEDS Day — Please consider donating at www.reds4veds.org
vEDS patients have a decreased life expectancy and live every day with the risk of life-threatening spontaneous ruptures.
thevedsmovement.org/category/vas...
#art #chronicillness #disabilityawareness #veds #marfans #lds
To celebrate the publication of Moving Mountains in Canada, I spoke to Alyssa Graybeal [Floppy] - you can read our conversation here:
#DisabilitySky #EDS #Marfans #MECFS #ChronicIllness #BookSky #HopeFest #NatureWriting
substack.com/home/post/p-...
YES. More of this please! #CTD #Chiari #CCI #hEDS #Marfans #Sjorgens #Autoimmune #Neurology #Neuroscience #Neurodivergent
Gah! Just spotted a typo in my hashtags. That should have said #Marfans above.
Here you go: Joint Hypermobility Syndrome and Membrane Proteins: A Comprehensive Review April 2024 Pliego-Arreaga, Cervantes-Montelongo, Silva-Martínez et al Biomolecues
www.mdpi.com/2218-273X/14...
Quite the mashup! #EDS #hEDS #HSD #MeDSky #NEISvoid #Marfans #Hypermobility #JHS #HMS #Zebras
Excellent & it's also badly needed for related conditions of #EDS (#hEDS type more common) #MARFANS #POTS #ME/CFS to inc. the multiple rare conditions they can cause without services like this makes finding healthcare a minefield to find any support due to lack of training current/new consultants.
Interesting News in Health article on connective tissue disorders including a note on research into potential treatments
#elhersdanlossyndrome #hypermobileEDS #hEDS #MarfanSyndrome #marfans #chronicillness
newsinhealth.nih.gov/2024/09/conn...
A 46 year old woman with brown hair wearing a black and orange sweater draped off one shoulder leans on a purple floral cane for walking support and has a ghost shaped cross body purse she is wearing 2 necklaces one is key shaped the other is hard to distinguish she is wearing black glasses and has pale skin she is wearing black leggings . The background is a parking lot of a restaurant.
It me. I've got a lot of ♡ problems. I have a #pacemaker & possibly #ehlersdanlos or #marfans i passed the heds test but have a bunch of symptoms of #veds marfans & something called #loeys-dietz.
I'm currently waiting on my genetic test. My doctor ordered a connective tissue &cardiovascular panel.
Reading Andy Jackson's poetry: Music our bodies can't hold; and learning about #marfans discrimination & othering.
