#ZebraStrong

𝓖𝓲π“ͺ π“œπ“Έπ“»π“ͺ (she/her)giamora@mastodon.green
2023-10-19

I love Dr. Linda Bluestein's #BendyBodies podcast, and this ep is a must see as her guest, Dr. Julie Robinson-Smith gives a #jaw anatomy lesson on camera. For all my #hypermobility peeps out there, you're about to have your minds (and jaws) blown.
youtube.com/watch?v=EGXZaUacqD

#hEDS #HSD #ZebraStrong #WomensHealth #OralHealth

𝓖𝓲π“ͺ π“œπ“Έπ“»π“ͺ (she/her)giamora@mastodon.green
2023-09-11

This episode of the #BendyBodiesPodcast is by far the most comprehensive look at the lower body challenges people like me who have #EDS/#HSD face in keeping ourselves upright.

The advice I wish I’d gotten 20 years ago? You knees hurt because your hips and your ankles are off. Lo and behold, that has indeed been the culprit all along.

bendybodiespodcast.com/73-unde

#Hypermobility #HypermobileEDS #ZebraStrong #TogetherWeDazzle

𝓖𝓲π“ͺ π“œπ“Έπ“»π“ͺ (she/her)giamora@mastodon.green
2023-05-02

New research suggests genetic identification for #eHDS -- #MTHFR.

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 #HypermobileEhlersDanlosSyndrome gives me great hope.

#HSD #Genetics #EhlersDanlosSyndrome #ChronicPain #MyEDSChallenge #MyHSDChallenge #TogetherWeDazzle #ZebraStrong

Nyx NightShade βœ…nyxnightshade@mindly.social
2023-03-25

Glad I was able to see the cyclathon through their first goal tonight, but now I need to sleep. πŸ’€ 😴

tiltify.com/@cdawg-va/connors-

twitch.tv/cdawgva/squad

You can play bingo with Ironmouse in chat and she posted the bingo card on her Twitter at:

twitter.com/ironmouse

πŸ’šπŸ’šπŸ’š

#idf #immunedeficiencyfoundation #primaryimmunodeficiency #cyclathon2 #cdawgva #abroadchris #premiertwo #rareandpowerful #piawareness #primaryimmune #thinkzebra #zebrastrong #plasmahero #donateplasma #roadto400k

Nyx NightShade βœ…nyxnightshade@mindly.social
2023-03-25

The cyclathon just hit $360k. And we have a singing stream from Ironmouse. I love it. πŸ’˜πŸ’˜πŸ’˜πŸ’˜πŸ’˜

tiltify.com/@cdawg-va/connors-

twitch.tv/cdawgva/squad

You can play bingo with Ironmouse in chat and she posted the bingo card on her Twitter at:

twitter.com/ironmouse

πŸ’šπŸ’šπŸ’š

#idf #immunedeficiencyfoundation #primaryimmunodeficiency #cyclathon2 #cdawgva #abroadchris #premiertwo #rareandpowerful #piawareness #primaryimmune #thinkzebra #zebrastrong #plasmahero #donateplasma #roadto400k

Nyx NightShade βœ…nyxnightshade@mindly.social
2023-03-25

I had to walk away from my screen to take care of some household chores, and when I came back, they had $350k! 😊😊😊😊

tiltify.com/@cdawg-va/connors-

twitch.tv/cdawgva/squad

You can play bingo with Ironmouse in chat and she posted the bingo card on her Twitter at:

twitter.com/ironmouse

πŸ’šπŸ’šπŸ’š

#idf #immunedeficiencyfoundation #primaryimmunodeficiency #cyclathon2 #cdawgva #abroadchris #premiertwo #rareandpowerful #piawareness #primaryimmune #thinkzebra #zebrastrong #plasmahero #donateplasma #roadto400k

Nyx NightShade βœ…nyxnightshade@mindly.social
2023-03-25

1 hour and 12 minutes into the stream and the guys have raised $330k for the IDF, and they've only done 11% of the cycle! 😊😊😊

tiltify.com/@cdawg-va/connors-

twitch.tv/cdawgva/squad

You can play bingo with Ironmouse in chat and she posted the bingo card on her Twitter at:

twitter.com/ironmouse

πŸ’šπŸ’šπŸ’š

#idf #immunedeficiencyfoundation #primaryimmunodeficiency #cyclathon2 #cdawgva #abroadchris #premiertwo #rareandpowerful #piawareness #primaryimmune #thinkzebra #zebrastrong #plasmahero #donateplasma

2023-01-31

It's International #DayOfTheZebra! But why do we use the zebra in our logo, and why is our dazzling community #ZebraStrong? ⁠
⁠
Medical students have been taught for decades that, β€œWhen you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.⁠ <Continued in comments>
⁠
Source The Ehlers-Danlos Society

#hEDS #EDS #ehlersdanlossyndrome
#chronicillness #chronicpain #zebra #dazzle

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