rarecondition specialneeds caudaequinagirl raisingawarenessofcaudaequinasyndrome specialneedsmom caudaequinasyndrome mentalhealth rare invisibledisability mentalhealthawareness raisingawareness warriors awareness inclusion itsokaynottobeokay itsoktocry spinalcordinjury advocate courage developmentaldelay disabilityadvocate diversity genetics hypotonia loeysdietz marfan marfansyndrome polymicrogyria specialneedsdads themiracleproject мойсадалматы
NEW VIDEO AND BLOG! link in bio! On Tuesday we had the pleasure of giving a seminar @naidex_show ! Our talk was about dating and relationships with a disability, with a bit about ataxia. Thank you so much to @ataxia_uk for asking us to do this- we are very honoured. Have a look at the new blog to see the video of the talk and read about before and after the seminar, and our feelings about it massive thank you to everyone who came along!
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#naidex #naidex45 #naidex2019 #disabilityawareness #diversityandinclusion #ablenotdisabled #accessible #accessibility #rarecondition #iamadaptive #100outof100 #ataxia #friedreichsataxia #curefa #birmingham #nec #movementdisorder #wheelchair #wheelchairlife #mobility #mobilityaid #neurologicalcondition #relationshipgoals #couplegoals #loveislove #blogger #disabilitycommunity #occupationaltherapy #neurology #disabilitygamechanger
¡Qué pasada! @redguy29, afectado de Piel de Mariposa, ha participado en un episodio de la famosa serie ¡@bigbangtheory_cbs con @kaleycuoco! Un grandisimo paso en la visibilidad de la Piel de Mariposa en todo el mundo Gracias @kaleycuoco por tu apoyo Your help gives us wings
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#PieldeMariposa #EpidermolisisBullosa #EB #EnfermedadPocoFrecuente #RareCondition #BigBanTheory #KaleyCuoco
ONCE AGAIN I TELL DOCTORS WHAT’S WRONG, WHAT SHOT I NEED AND WHAT SCRIPT I NEED. They’re amazed my fathers a doctor. YES. I consult with my POPS daily; let me spit some knowledge here. #chronicillness #chronicillnesswarrior #chronicillnesslife #chronicillnessmemes #rarecondition #repetition #amazing #spittingknowledge #schoolyou #spoonie #rocephin #antibiotics #sickandtiredofbeingsickandtired #invisbleillness #daddysgirl #ilovemyfamily #ilovemyfather #myfatherismyhero #jackblack #memes #memesdaily #sarcasticmemes #
Spring has sprung! Perfect weather for us to be exploring with the @batecmobility in @suttonparknnr
Spring is my favourite time of year. The only thing that sometimes upsets me is that I feel awful for not getting out and enjoying it when I’m having a ‘bad day’. When the typical Great British weather steadies out and we get a dry and sunny spell, I feel like I should be out in it all the time. The days when I don’t feel well enough to properly enjoy my horses or go out exploring with Dan and the dog, I feel frustrated, conflicted, low and guilty. My mental health really needs to be out and about, but my physical health just needs rest. Dan worries about holding me back because he’s in a wheelchair, but the truth is that I sometimes worry that I hold him back. Thankfully I soon forget it after a few lovely days out together having fun! Love, Becky. X
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#curefa #disabilityawareness #iamadaptive #potssyndrome #posturalorthostatictachycardiasyndrome #hypermobility #hipdysplasia #relationshipgoals #diversityandinclusion #ablenotdisabled #friedreichsataxia #ataxia #exploring #thegreatoutdoors #greatbritain #countryside #countrygirl #loveislove #iamable #disabledbodiesmatter #rarecondition #mobilityaid #accessibility #accessforall #couplesgoals #dogsofinstagram #chronicillness #chronicpain #movementdisorder #neurologicaldisorder
In the past month I’ve been described as ‘rare, rare’ and an enigma by a doctor.
It’s just not that helpful is it?
Anyone else have this experience?
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#enigma #medicalenigma #raredisease #rareillness #rarecondition #zebra #zebrastrong #posturalorthostatictachycardiasyndrome #potssyndrome #ehlersdanlos #eds3 #hypermobile #chronicmigraines #chronicheadache #vestibular #dizzy #mastcelldisease #dysautonomia #interstitialcystitis #bladderpain #fibrowarrior #raynauds #healing #recovery #autoimmunedisease #lowhistamine
Getting some strength back in her body to do some amazing standing .
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#kaidencehazel #lissencephaly #smoothbrain #rarecondition #rare #genetics #ngtube #tubefed #pegfeed #epilepsy #seizure #seizuressuck #specialneeds #specialneedsfamily #physiotherapy #speechtherpay #occupationaltherapy #learningtowalk