Diary of a Cyborg

May is EDS Awareness Month. We run a freephone helpline for support, local support groups run by amazing volunteers often with speakers on managing EDS, and membership is free at ehlers-danlos.org We have many videos and resources on management strategies. We’re here ❤️🦓

@ehlersdanlosuk Where can these shirts be purchased?

Isabel and Liz Harvie are ready to raise awareness for May Awareness Month! They have been sporting their EDS tshirts in the gym to get people asking about EDS! How will you raise awareness this May? 💛🖤🦓 #EhlersDanlosSyndrome #EDSawarenessmonth #EDSAM

We need help to raise awareness of the reality of living with the Ehlers-Danlos syndromes. We need your stories, experiences, quotes and photos to help us make an impact this May Awareness Month. What do you wish people knew about life with EDS? What is a day with EDS like?

@BorgFest @jamesahyoung @NigelAckland @aannggeellll @NeilHarbisson @moonribas @VIKTORIAMODESTA @luberachi @LukeRobertMason @StelarcStelarc @ramez @bruces @jonl @EFFaustin @BDYHAX Thank you for vocalizing our right to our information and our privacy and our data!

Happy #CyborgPride Day! @jamesahyoung @NigelAckland @aannggeellll @NeilHarbisson @moonribas @VIKTORIAMODESTA @luberachi @LukeRobertMason @StelarcStelarc @ramez @bruces @jonl @EFFaustin @BDYHAX @VIKTORIAMODESTA #SXSW2018 effaustin.org/cyborg-pride-p…

@BorgFest @EFFaustin I’ll see if I can draft something up

@DiaryofaCyborg We do too! Do you want to send a statement we can read out loud? #cyborgpride @EFFaustin #sxsw2018

Rare Disease Day is Wed! Klippel-Feil, Ehlers-Danlos, Vasculitis, Cervical Dystonia. As a patient I won't back down. @KFS_Freedom @TheEDSociety @dmrf @VasculitisFound @CSFinfo @Raresupport @SanfordCoRDS @MD_Briggs @eurordis @rarediseaseday @NIHPainResearch @ORDR @PatientWorthy

#Burnout is a system problem not a physician problem: ms.spr.ly/6019rL9xN

One of those apps that gives rebates for shtuff. I got $25 back around xmas from this. ibotta.com/r/cvafkwx

BIG news. FDA confirms they do NOT prohibit (as some had claimed) giving patients their device data! @HugoOC slays the dragon! twitter.com/healthythinker…

#invisibleillness I may look perfectly normal on the outside, but my #X-rays have some serious… instagram.com/p/BK7N083jord/

#repost @photographygod's photo of my bruised knees and pasty legs. #chronicpain… instagram.com/p/BKq9WQoD4we/

#chronicpain #ehlersdanlossyndrome #ehlers #zebra #hypermobility #hypermobile #documentary… instagram.com/p/BKHJZGKDnRa/

Sometimes I can show off, most of the time I'm in #chronicpain. September is Chronic Pain… instagram.com/p/BJ_IXTaDA1l/

Spotted at #BWI #CPRSavesLives #CPR #CPRtraining #HandsonlyCPR instagram.com/p/BJRYAQBjmcu/

#tbt to a time when I was blonde and at the #MayoClinic #stresstest instagram.com/p/BEwLk6mHOnS/

Droppin' some sweet beats #echo #echocardiogram #channelopathy

Models of the 2 devices I've had implanted #cyborg #lqt #longqtsyndrome instagram.com/p/BD_v2dunOmh/

We can't stop listening to that montage of movie sounds they played at the Oscars read.bi/21DQAsS

This #RareDiseaseDay, we are with you in the fight. Together, we can make a difference and find a cure.