Diary of a Cyborg

Diary of a Cyborg tells the story of what life is like for patients under the age of 25 living with an Internal Defibrillator & Sudden Cardiac Death.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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 https://t.co/UPzxNygavx We have many videos and resources on management strategies. We’re here ❤️🦓

[Diary of a Cyborg @DiaryofaCyborg]

@ehlersdanlosuk Where can these shirts be purchased?

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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?

[Diary of a Cyborg @DiaryofaCyborg]

@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!

[Borg Fest @BorgFest]

Happy #CyborgPride Day! @jamesahyoung @NigelAckland @aannggeellll
@NeilHarbisson @moonribas @VIKTORIAMODESTA @luberachi @LukeRobertMason @StelarcStelarc @ramez @bruces @jonl @EFFaustin @BDYHAX @VIKTORIAMODESTA #SXSW2018 https://t.co/Pv7x2mS4Ay

[Diary of a Cyborg @DiaryofaCyborg]

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

[Sharon Rose Nissley @Rose_of_Sharon8]

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

[Medscape @Medscape]

#Burnout is a system problem not a physician problem: https://t.co/BSFMFmZ2WZ

[Diary of a Cyborg @DiaryofaCyborg]

One of those apps that gives rebates for shtuff. I got $25 back around xmas from this. https://t.co/9e9G5ta3DF

[Dave deBronkart @ePatientDave]

BIG news. FDA confirms they do NOT prohibit (as some had claimed) giving patients their device data! @HugoOC slays the dragon! https://t.co/eCR3rN50qM

[Diary of a Cyborg @DiaryofaCyborg]

#invisibleillness I may look perfectly normal on the outside, but my #X-rays have some serious… https://t.co/IvX4WskpSF

[Diary of a Cyborg @DiaryofaCyborg]

#repost @photographygod's photo of my bruised knees and pasty legs. #chronicpain… https://t.co/E8e0oMiLYd

[Diary of a Cyborg @DiaryofaCyborg]

#chronicpain #ehlersdanlossyndrome #ehlers #zebra #hypermobility #hypermobile #documentary… https://t.co/prJQpFyLc7

[Diary of a Cyborg @DiaryofaCyborg]

Sometimes I can show off, most of the time I'm in #chronicpain. September is Chronic Pain… https://t.co/aeA77DvpLm

[Diary of a Cyborg @DiaryofaCyborg]

Spotted at #BWI #CPRSavesLives #CPR #CPRtraining #HandsonlyCPR https://t.co/77gKx8LWTJ

[Diary of a Cyborg @DiaryofaCyborg]

#tbt to a time when I was blonde and at the #MayoClinic #stresstest https://t.co/M3aturANCN

[Diary of a Cyborg @DiaryofaCyborg]

Droppin' some sweet beats #echo #echocardiogram #channelopathy

[Diary of a Cyborg @DiaryofaCyborg]

Models of the 2 devices I've had implanted #cyborg #lqt #longqtsyndrome https://t.co/ppXEZZYoDr

[Insider Tech @TechInsider]

We can't stop listening to that montage of movie sounds they played at the Oscars https://t.co/oKshc6oWNA

[MPN Research Foundation @MPN_RF]

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