Today is rare disease day let your loved ones with a rare disease know they are loved. In medical school doctors are told "When you hear hoof beats think horses not zebras." This means to think of a more likely cause over something thought of as farfetched or rare. This makes it quite hard for anyone with one of these diseases to be heard and taken seriously as they are often shoved aside as hypochondriacs. I remember always being called one by everyone including friends and family. I remember starting to believe them. I remember being afraid of stairs for a long time because I fell down them, I remember these incidents leading to me being called clumsy. I remember being in physiotherapy in grade 1, I remember wearing high tops shoes because my ankles were "weak" and gave out. I remember my parents thinking I faked stomach aches because I liked the taste of Pepto. I remember still falling down stairs as a teenager and being told I was doing it for attention. I dont need to remember the stigma and comments like being called lazy because I still face them.. but mostly I remember the struggle to find out what was wrong with me and the relief of finding out I wasnt crazy because Not everyone gets to win the battle of seeking answers. . . . . . #eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome https://www.instagram.com/p/CpOvh_5D1XH/?igshid=NGJjMDIxMWI=

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Participants needed for online survey! Topic: "Hypermobility Spectrum Disorder in Professional Instrumental Musicians" https://t.co/xkAAdE6SzB via @SurveyCircle #HypermobilitySpectrumDisorder #instrumentalists #music #LivedExperiences #survey #surveycircle https://t.co/jlYsvevLPA

— Daily Research @SurveyCircle (@daily_research) Mar 9, 2023

Vanmorgen even een ‘vlekje wegwerken’ bij de dokter… (Die van de reclame was leuker… LOL) #myview #gezondheid #gezondleven #CreativeHealth #burnout #ADHD #neurodivers #queer #trauma #Crohn #Bechterew #COPD #hypermobiel #mentalegezondheid #migraine #pijn #gelukkig #blijleven #doorgaan . . . #health #healthy #healthylifestyle #healthier #healthyliving #mentalhealth #Crohns #crohnsdisease #crohnawareness #hypermobilityspectrumdisorders https://instagr.am/p/CiaYniyjdQK/

In love with my new shirt #tiger #shirt #T-shirt #clothes #me #selfie #spoonie #chronicillness #chronicillnesswarrior #chronicfatiguesyndrome #mecfs #fibromyalgia #fibro #eds #hypermobilityspectrumdisorders #arthritis #psoriasis #psoriaticarthritis #autoimmunedisease #autoimmunewarrior https://www.instagram.com/p/B92Hna5AZnb/?igshid=bg4rm2cr7qme

The reality of a flare up when you have #EDS & #dysautonomia is a painful state of existence. Thankfully a flare-up means you get to come back out of it at some point. Erica talks about her experience. What's your experience of flare-ups like? Share with us whether it's similar or different, we'd love to hear from everyone! #hypermobility #hypermobilityconnect #ehlersdanlos #flareups #reality #chronicillness #chronicallyill #hypermobilityspectrumdisorders #pots #painful #illness #invisibileillness https://www.hypermobilityconnect.com/flare-up-eds-dysautonomia/

I've been feeling very unsure of myself the last few days. It has been a very busy period, with a lot of family issues to navigate. Quite frankly I'm exhausted both physically and emotionally. I want to write, craft, create but by the end of each day I barely have the energy to eat my evening meal. I'm not sure what to write here...do I post about my own health, my experience as an Aromatherapist, personal trainer and coach, my enjoyment of the natural world and my witchy explorations. I'm so busy getting through each day and making sure the hubster and kids are all sorted I don't know where to start with my own stuff. When you're feeling overwhelmed with everything, how do you work out where to start? #bloggingbed #chronicillness #wherethetiredgirlsare #zebrastrong #fibromyalgia #ehlersdanlossyndrome #hypermobilityspectrumdisorders #hypermobileehlersdanlos #hEDS #butyoudontlooksick #thespooniesisterhood #spoonie #coeliacdisease #invisibleillness #mentalhealth #abundantlife #blogger #writer #chroniccoven #witchy #aromatherapist #naturalhealth #spooniewitch #aromatherapy #holistichealth #wellness #wellbeing #itsokaynottobeokay #mentalwellness #emotionalhealth https://www.instagram.com/p/B37skWrgDQj/?igshid=2y5wokf1u4gw

Zwei lebende Zebrastreifen :O⁠ ⁠ ⁠ ⁠ ⁠ ⁠ ⁠ #hypermobility #spoonie #ehlersdanlos #chronicillness #marfansyndrome #loeysdietzaustralia #chronicpain #dysautonomia #chronicfatigue #loeysdietz #hypermobilityconnect #ctd #pots #loeysdietzsyndrome #eds #mybendybody #gastroparesis #edsawareness #potsie #hypermobilityspectrumdisorders #hypermobileeds #positivehelpforhypermobility #hopeforhypermobility #theehlersdanlossyndromes #hsd #jointhypermobility #loeysdietzawareness #connectivetissuedysplasia #safari #ehlersdanlossyndrome https://www.instagram.com/p/B3C9sF2ncwp/?igshid=1220a41wuxk1v

I love my new yarn in this months @knitcrate 💖💖💖 #unravelyourknitcrate #toriastrinkets #knitcrate #instacrochet #lovecrochet #miba #chronicpainwarrior #meningitissurvivor #hypermobilityspectrumdisorders (at Crewe) https://www.instagram.com/p/B0EG28qFBxh/?igshid=4hv4p4cpi01m

Reposted from @practically_chronic I ain’t buying what you selling… . . . . #Fibromyalgia #FibromyalgiaAwareness #FibromyalgiaWarrior #FibromyalgiaSucks #Hypermobility #HypermobilitySyndrome #HypermobilitySpectrumDisorder #HypermobileEhlersDanlosSyndrome #Chronicllness #ChronicIllnessAwareness #ChronicIllnessMemes #ChronicPain #ChronicPainMemes #ChronicPainLife #ChronicPainAwareness #ChronicPainSucks #Spoonie #SpoonieLife #SpoonieMemes #SpoonieSupport #SpoonieCommunity #SpoonieStrong #SpoonieHumor #MentalHealth #Disabled #Anxiety #DisabilityAwareness (at Warren, Michigan) https://www.instagram.com/p/CUESeboMcmW/?utm_medium=tumblr

That HSD/EDS feel when you go to crack a joint only to realize it was actually subluxed

Me? Straight? According to my physiotherapist i dont even know how to sit straight

Ever wondered why I’m a zebra? Read the repost below. It’s also kinda why it took 27 years for me to get a diagnosis. I love Zebras and zebra print stuff. Image description: a stuffed toy Zebra wearing an EDS t shirt and surrounded by leaflets about Ehlers Danlos. REPOST BELOW Posted @withregram • @ehlersdanlosuk Have you ever wondered why we have a zebra in our logo, as our Ezra mascot, or why some of our members refer to themselves as zebras (or love zebra print!)? “When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare or complex conditions. Today is the #DayoftheZebra - share your photos with us! . . . . . . #ehlersdanlossyndrome #hypermobilityspectrumdisorder #zebra #ehlersdanlos https://www.instagram.com/p/CKtkoEPhKAM/?igshid=a7s7yz86cfdd

It is Ehlers Danlos Syndrome awareness month, so you'll probably see a few more EDS related posts from me this month. There are 13 types of EDS. I have hypermobile EDS (hEDS) which is the most common types and has many similarities to hypermobile spectrum disorders (hsd). #Repost @pawsomepurrtraits (@get_repost) ・・・ As some of you may know I have what’s now known as Hypermobile Ehlers Danlos Syndrome which is a disorder causing loose painful joints, fatigue plus many more symptoms. It’s EDS awareness month and to highlight this I will be completing my 50 state drawing challenge portraits in black and white, look out for these special pictures over the month! . . . #artistsoninstagram #zebra #zebrawarrior #butyoudontlooksick #invisibleillness #thinkzebra #blackandwhite #eds #heds #ehlersdanlossyndrome #ehlersdanlos #hypermobilitysyndrome #hypermobility #hypermobileehlersdanlossyndrome #edsawareness #edsawarenessmonth #hypermobilejoints #edszebra #edsawarenessmonth #hypermobileehlersdanlos #edszebrawarriors #edszebras #hypermobile #edszebrasuppport #awareness #hypermobileeds #hypermobilityawareness #hypermobilityspectrumdisorder #awarenessmonth

Today's blood pressure cuff tattoo isn't as intense as they often are, but the poor machine tried several times and couldn't get a reading on me at all. 😂

#SecretlyUndead

https://www.instagram.com/p/B2P6YqcAd9D/?igshid=wlfvpwdfegp5

Bahahahaha. Can you freakin imagine???????⠀ ⠀ ⠀ Friday Fun One 😂😂😂 #hypermobility #hypermobilityspectrumdisorders #theehlersdanlossyndromes #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #spoonie #zebra #chronicillness #pots #dysautonomia #chronicpain #chronicfatigue #mybendybody #hopeforhypermobility (at Hypermobility Connect)

Right hand is swollen, especially between the middle and ring fingers... #ehlersdanlossyndrome #hypermobilityspectrumdisorder #eds #hsd #connectivetissuedisorders #thishurts #chronicillness #swelling #pain https://www.instagram.com/p/B_u_ppsDHiA/?igshid=1oogi61gjf2hx