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#finally had an appointment to go to the#Spinal#Rehabilitation unit. Really looking forward to moving#forward with my care.#neurology#neuroscience#superficialsiderosis#RareDisease -
3D view to measure hemosiderin
#superficialsiderosis https://twitter.com/RemiKessler/status/1212475916451893249 … -
Our novel whole-brain
#MRI protocol for iron quantification that we developed using#Osirix after a 2-year clinical trial for#Ferriprox (deferiprone) in superficial siderosis, mentored by Michael Levy MD, PhD@BrighamWomens@harvardmed#superficialsiderosis#chelation#brainhttps://twitter.com/LivingwithSS/status/1206595118079365120 …
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Neurodegeneration and living with a perpetual Compromised Neurological Reserve
#superficialsiderosis#brain#neurology#cognitiveimpairmenthttps://livingwithss.com/dir/living-with-a-compromised-neurological-reserve/ … -
#spirit#level to get the height of the#evd right.#neurology#superficialsiderosis#shunt#neuroscience#hydrocephaluspic.twitter.com/kZEjVdV17F
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.
#EVD#Drain#Ventricles . Sudden bout of#hydrocephalus after#csf#nuclear#scan.#cfsleak#superficialsiderosis#Medical#journeypic.twitter.com/cvSmYA2u26
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Had a lovely day on Sunday meeting @RareRoom and
@RareMum75.#superficialsiderosis affects roughly 1 in 3 million based on current estimations so this was a pretty#rare meeting.#RareDisease#neurology#NHS#neurosciences@NHSMillion@rarediseaseuk@LivingwithSSpic.twitter.com/LfkDjh6xHI
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The calendar is mis-aging me! I can't possibly be 60 tomorrow, this is simply ridiculous I am a ?yr old gender non-conforming slightly ataxic, slightly deaf, angel fish No go-fundme page
#SuperficialSiderosis (I lied about the fish part) Good night Twitter https://www.thesilentbleed.co.uk/ -
Patients with
#SuperficialSiderosis (SS), a rare central nervous system condition, experience hearing loss and gait issues. If you have SS, help build a supportive discussion at#MayoClinicConnect. https://mayocl.in/2t03wzb pic.twitter.com/It1J6AIAjD
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#MRI results with SWI related to neurotological findings in patients suffering from#deafness and#ataxia due to#superficialsiderosis.#visualabstract https://bit.ly/2Amqt3F pic.twitter.com/cL1dSxTCCw
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My aunt needs your assistance!! Her husband is a former vietnam pow and she has a super rare disease. They are struggling to pay for a handicap van. Any amount helps!! https://www.gofundme.com/mgw932-handicap-van-needed …
#raredisease#superficialsiderosis#warvet#veteran#donate#gofundme#vietnamvet -
Ten years for us.Welcome to our world.
#RareDisease#SuperficialSiderosis https://twitter.com/rarediseaseuk/status/1068074663480188929 …
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Have you heard of
#SuperficialSiderosis? Check out this#Fantastic website to find out more about the#raredisease affecting people all around the world.#neurology#neurosciences#ChronicPain#hearingloss#ataxia#bleed#brain#spinehttps://livingwithss.com/dir/ -
Neurodegenerative Vision Problems https://livingwithss.com/dir/neurodegenerative-vision-problems/ …
#nystagmus#neurodegeneration#SuperficialSiderosis -
Consent form signed, ready to have this pseudomeningocele closed first thing tomorrow morning

#CSF#leak#Neurology#Neurosciences#neurosurgery#superficialsiderosis@LivingwithSS@csfleakinfo@CsfLeakIreland -
We are more than our symptoms
#livelife#raredisease#superficialsiderosis pic.twitter.com/REst4fLIXk
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#superficialsiderosis a harsh#raredisease that urgently needs a cure good luck Rhys keep goinghttps://twitter.com/RhysHolmes/status/1041364843033518081 … -
New DSS
#CompassionateAllowance conditions -#FibrolamellarCancer - Megacystis Microcolon Intestinal Hypoperistalsis Syndrome#MMIHS - Megalencephaly Capillary Malformation Syndrome#MCAP -#SuperficialSiderosis of the Central Nervous System - Tetrasomy18p https://buff.ly/2Mo736T pic.twitter.com/0KAFgySW4q
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