#csfleak — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #csfleak, aggregated by home.social.
-
#Introduction 👋Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others. -
#Introduction 👋Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others. -
#Introduction 👋Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others. -
#Introduction 👋Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others. -
#Introduction 👋Basically what's in my in my name/bio covers most of it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h when gets impossible for us to use. Sad it has been ruined aft using as a tool for 10+yrs post hEDS dx.
Helps me to help others. -
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! #BackThe1in6 #Dysautonomia #POTS #pwME #MEcfs #CSFleak #Stenosis etc
https://campaigns.mssociety.org.uk/page/106592/petition/1 -
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! #BackThe1in6 #Dysautonomia #POTS #pwME #MEcfs #CSFleak #Stenosis etc
https://campaigns.mssociety.org.uk/page/106592/petition/1 -
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! #BackThe1in6 #Dysautonomia #POTS #pwME #MEcfs #CSFleak #Stenosis etc
https://campaigns.mssociety.org.uk/page/106592/petition/1 -
I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! #BackThe1in6 #Dysautonomia #POTS #pwME #MEcfs #CSFleak #Stenosis etc
https://campaigns.mssociety.org.uk/page/106592/petition/1 -
@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFleak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx -
@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFleak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx -
@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFleak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx -
@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFLeak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISVoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx -
@bennessb
👋What's in my name/bio covers it:-
Helping awareness of Ehlers-Danlos Syndrome #EDS & Hypermobility Spectrum #HSD
Multisystemic Connective Tissue disorders which can =
#POTS #OI #MCAS #MEcfs #CSFleak #SIH/IIH #BoneSpurs #Stenosis #CCI #TMJ #ON/TN #CRPS #SFN & more
#NEISvoid & a #LongCovid supporter
Backup to twitter @luvenice_h if/when gets impossible for us to use.
Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx -
Hi! I’ve never done something like this before, but it’s #IDPwD so why not? My name is Kathleen, and I’m disabled. I’ve got #hEDS (that acts suspiciously like vEDS), #POTS, #MCAS, #SevereAsthma, #CSFLeak, essential tremor, occipital neuralgia…the list goes on and on. You can read about my recent neuro/vision struggles in the Nerve Block Saga link in my profile. This is an Amazon wishlist (also in my profile), mostly for #disability related products, if you’re so inclined: https://www.amazon.com/hz/wishlist/ls/19RHSTWOMQDQ0?ref_=wl_share
-
Hello! So excited to be here that I forgot to do an #introduction. I'm a former lawyer who fell into a new career as a food & travel #writer. For 10 years, I traveled the world, & wrote (& ate!), with bylines at NatGeo, CNN, The Guardian, BBC, & more, until a lumbar puncture left me with a chronic #CSFleak in 2017, & #disabled.
I now write about curiosity, health, & loss. For more about my story please see my site, Legal Nomads, or this piece: https://edition.cnn.com/travel/article/jodi-ettenberg-legal-nomads-csf-leaks-wellness-cmd/index.html