Lily Rose Health<p>What I had *asked* <a href="https://mastodon.me.uk/tags/Neurology" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Neurology</span></a> to do in fact, was to look again at my scans to double check for <a href="https://mastodon.me.uk/tags/Chiari" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Chiari</span></a> malformation/ <a href="https://mastodon.me.uk/tags/TetheredCord" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>TetheredCord</span></a> and/ or <a href="https://mastodon.me.uk/tags/CSFleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFleak</span></a> - all of which are plausible given my enormous range of symptoms.</p><p>Computer said no. My scans were not available to look at.</p><p><a href="https://mastodon.me.uk/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.me.uk/tags/NeuroME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NeuroME</span></a></p>
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#CSFleak
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Judyintheskynet<p>Das Gesundheits-Magazin Ourbodies hat meine Geschichte erzählt, wie es so plötzlich zu meiner schweren Behinderung kam und es mir damit geht, mit Schwerpunkt auch auf Aufklärung zu <a href="https://social.tchncs.de/tags/CFSleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFSleak</span></a> nach Lumbalpunktion, <a href="https://social.tchncs.de/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a>, aber auch ganz allgemein. Und mein coping (wenn es denn das überhaupt gibt bei ME) mit der Kunst und unser Projekt, mit dem wir mehr awareness schaffen wollen.</p><p><a href="https://ourbodies.at/suechtig-nach-leben-in-einem-paralleluniversum/" rel="nofollow noopener" target="_blank"><span class="invisible">https://</span><span class="ellipsis">ourbodies.at/suechtig-nach-leb</span><span class="invisible">en-in-einem-paralleluniversum/</span></a></p><p><a href="https://social.tchncs.de/tags/nichtgenesen" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>nichtgenesen</span></a> <a href="https://social.tchncs.de/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://social.tchncs.de/tags/spinalleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>spinalleak</span></a> <a href="https://social.tchncs.de/tags/csfleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>csfleak</span></a> <a href="https://social.tchncs.de/tags/disabilityawareness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>disabilityawareness</span></a> <a href="https://social.tchncs.de/tags/Lumbalpunktion" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Lumbalpunktion</span></a></p>
Bendy~HEDS & Co 🥄👩🏻🦼😷<p><a href="https://mastodonapp.uk/tags/Introduction" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Introduction</span></a> 👋Basically what's in my in my name/bio covers most of it:-<br>Helping awareness of Ehlers-Danlos Syndrome <a href="https://mastodonapp.uk/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>EDS</span></a> & Hypermobility Spectrum <a href="https://mastodonapp.uk/tags/HSD" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>HSD</span></a><br>Multisystemic Connective Tissue disorders which can =<br><a href="https://mastodonapp.uk/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://mastodonapp.uk/tags/OI" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>OI</span></a> <a href="https://mastodonapp.uk/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MCAS</span></a> <a href="https://mastodonapp.uk/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodonapp.uk/tags/CSFLeak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFLeak</span></a> <a href="https://mastodonapp.uk/tags/SIH" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SIH</span></a>/IIH <a href="https://mastodonapp.uk/tags/BoneSpurs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>BoneSpurs</span></a> <a href="https://mastodonapp.uk/tags/Stenosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Stenosis</span></a> <a href="https://mastodonapp.uk/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CCI</span></a> <a href="https://mastodonapp.uk/tags/TMJ" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>TMJ</span></a> <a href="https://mastodonapp.uk/tags/ON" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ON</span></a>/TN <a href="https://mastodonapp.uk/tags/CRPS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CRPS</span></a> <a href="https://mastodonapp.uk/tags/SFN" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SFN</span></a> & more<br><a href="https://mastodonapp.uk/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a> & a <a href="https://mastodonapp.uk/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> supporter<br>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.<br>Helps me to help others.</p>
Bendy~HEDS & Co 🥄👩🏻🦼😷<p>I've signed the @NeuroAlliance petition, calling for UK governments to urgently establish a Neuro Taskforce. Add your name too! <a href="https://mastodonapp.uk/tags/BackThe1in6" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>BackThe1in6</span></a> <a href="https://mastodonapp.uk/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Dysautonomia</span></a> <a href="https://mastodonapp.uk/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://mastodonapp.uk/tags/pwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>pwME</span></a> <a href="https://mastodonapp.uk/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodonapp.uk/tags/CSFleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFleak</span></a> <a href="https://mastodonapp.uk/tags/Stenosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Stenosis</span></a> etc<br><a href="https://campaigns.mssociety.org.uk/page/106592/petition/1" rel="nofollow noopener" target="_blank"><span class="invisible">https://</span><span class="ellipsis">campaigns.mssociety.org.uk/pag</span><span class="invisible">e/106592/petition/1</span></a></p>
Bendy~HEDS & Co 🥄👩🏻🦼😷<p><span class="h-card"><a href="https://spore.social/@bennessb" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>bennessb</span></a></span><br>👋What's in my name/bio covers it:-<br>Helping awareness of Ehlers-Danlos Syndrome <a href="https://mastodonapp.uk/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>EDS</span></a> & Hypermobility Spectrum <a href="https://mastodonapp.uk/tags/HSD" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>HSD</span></a><br>Multisystemic Connective Tissue disorders which can =<br><a href="https://mastodonapp.uk/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://mastodonapp.uk/tags/OI" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>OI</span></a> <a href="https://mastodonapp.uk/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MCAS</span></a> <a href="https://mastodonapp.uk/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodonapp.uk/tags/CSFLeak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFLeak</span></a> <a href="https://mastodonapp.uk/tags/SIH" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SIH</span></a>/IIH <a href="https://mastodonapp.uk/tags/BoneSpurs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>BoneSpurs</span></a> <a href="https://mastodonapp.uk/tags/Stenosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Stenosis</span></a> <a href="https://mastodonapp.uk/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CCI</span></a> <a href="https://mastodonapp.uk/tags/TMJ" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>TMJ</span></a> <a href="https://mastodonapp.uk/tags/ON" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ON</span></a>/TN <a href="https://mastodonapp.uk/tags/CRPS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CRPS</span></a> <a href="https://mastodonapp.uk/tags/SFN" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SFN</span></a> & more<br><a href="https://mastodonapp.uk/tags/NEISVoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISVoid</span></a> & a <a href="https://mastodonapp.uk/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> supporter<br>Backup to twitter @luvenice_h if/when gets impossible for us to use.<br>Sad Twitter has been ruined aft using as a tool for 10yrs post hEDS dx. Helps me to help others especially the undx</p>
Kathleen Burnard :BP_cuff:<p>Hi! I’ve never done something like this before, but it’s <a href="https://med-mastodon.com/tags/IDPwD" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>IDPwD</span></a> so why not? My name is Kathleen, and I’m disabled. I’ve got <a href="https://med-mastodon.com/tags/hEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>hEDS</span></a> (that acts suspiciously like vEDS), <a href="https://med-mastodon.com/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a>, <a href="https://med-mastodon.com/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MCAS</span></a>, <a href="https://med-mastodon.com/tags/SevereAsthma" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SevereAsthma</span></a>, <a href="https://med-mastodon.com/tags/CSFLeak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFLeak</span></a>, 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 <a href="https://med-mastodon.com/tags/disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>disability</span></a> related products, if you’re so inclined: <a href="https://www.amazon.com/hz/wishlist/ls/19RHSTWOMQDQ0?ref_=wl_share" rel="nofollow noopener" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">amazon.com/hz/wishlist/ls/19RH</span><span class="invisible">STWOMQDQ0?ref_=wl_share</span></a></p>
Jodi Ettenberg<p>Hello! So excited to be here that I forgot to do an <a href="https://mastodon.online/tags/introduction" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>introduction</span></a>. I'm a former lawyer who fell into a new career as a food & travel <a href="https://mastodon.online/tags/writer" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>writer</span></a>. 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 <a href="https://mastodon.online/tags/CSFleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFleak</span></a> in 2017, & <a href="https://mastodon.online/tags/disabled" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>disabled</span></a>. </p><p>I now write about curiosity, health, & loss. For more about my story please see my site, Legal Nomads, or this piece: <a href="https://edition.cnn.com/travel/article/jodi-ettenberg-legal-nomads-csf-leaks-wellness-cmd/index.html" rel="nofollow noopener" target="_blank"><span class="invisible">https://</span><span class="ellipsis">edition.cnn.com/travel/article</span><span class="invisible">/jodi-ettenberg-legal-nomads-csf-leaks-wellness-cmd/index.html</span></a></p>
Nigigiizis<p>During this time one of the weird side effects I developed was sudden adult-onset central heterochromia -- that is, my eyes changed color. So strange. (These are both me. My eyes were solid dark brown until about age 28.) The color change is permanent. My vision is back to normal.</p><p><a href="https://mastodon.world/tags/heterochromia" class="mention hashtag" rel="tag">#<span>heterochromia</span></a> <a href="https://mastodon.world/tags/tbi" class="mention hashtag" rel="tag">#<span>tbi</span></a> <a href="https://mastodon.world/tags/neuroscience" class="mention hashtag" rel="tag">#<span>neuroscience</span></a> <a href="https://mastodon.world/tags/optometry" class="mention hashtag" rel="tag">#<span>optometry</span></a> <a href="https://mastodon.world/tags/iih" class="mention hashtag" rel="tag">#<span>iih</span></a> <a href="https://mastodon.world/tags/pseudotumor" class="mention hashtag" rel="tag">#<span>pseudotumor</span></a> <a href="https://mastodon.world/tags/shunt" class="mention hashtag" rel="tag">#<span>shunt</span></a> <a href="https://mastodon.world/tags/VisionLoss" class="mention hashtag" rel="tag">#<span>VisionLoss</span></a> <a href="https://mastodon.world/tags/CSFleak" class="mention hashtag" rel="tag">#<span>CSFleak</span></a></p>
Lily Rose Health<p>I saw a suggestion earlier that <a href="https://mastodon.me.uk/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> and, by extension, <a href="https://mastodon.me.uk/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> can damage connective tissue. Anybody know if there is research confirming this?<br><a href="https://mastodon.me.uk/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>EDS</span></a> <a href="https://mastodon.me.uk/tags/Chiari" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Chiari</span></a> <a href="https://mastodon.me.uk/tags/RCCX" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>RCCX</span></a> <a href="https://mastodon.me.uk/tags/CSFleak" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CSFleak</span></a></p>
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