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hypermobilityconnect-blog · 6 years

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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/

#flareups #painful #eds #hypermobility #chronicillness #hypermobilityspectrumdisorders #illness #hypermobilityconnect #dysautonomia #invisibileillness #pots #ehlersdanlos #reality #chronicallyill

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sebastian-von-d-blog · 5 years

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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

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hypermobilityconnect-blog · 6 years

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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)

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hypermobilityconnect-blog · 6 years

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Finally getting a diagnosis can bring with it a myriad of emotions from relief to disbelief and everything in between. 😢🤔🤗😱 In this post, Liz talks about her journey to diagnosis and how she felt about it. What was YOUR journey to diagnosis like? How did you FEEL to finally get a diagnosis? Let us know in the comments! |-|-|-| #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #jointhypermobility #hEDS #ehlersdanlosaustralia #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #spoonie #zebra #chronicillness #chronicillnesswarrior #pots #dysautonomia #chronicpain #chronicfatigue #mybendybody #hopeforhypermobility #hopeful #helpful #healthy Link also in insta bio: https://www.hypermobilityconnect.com/finally-getting-diagnosis/ (at Hypermobility Connect)

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hypermobilityconnect-blog · 6 years

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Feb 28th is #rarediseaseday⠀ ⠀ In Australia, Rare Diseases are defined as "a condition, syndrome or disorder that affects 1 in 10 000 people or less" (The Australian Therapeutic Goods Authority).⠀ ⠀ To date, there are believed to be more than 8000 known rare diseases.⠀ ⠀ The Ehlers-Danlos Syndromes, Marfan Syndrome & Loeys-Dietz Syndrome are three of the Rare Conditions that members of our Hypermobility Connect community are living with. ⠀ ⠀ While we prefer not to call them diseases, we still want to raise awareness about them & the need for more research into them.⠀ ⠀ You can read more about Rare Disease Day at: http://www.rarediseasedayaustralia.com.au/australia/⠀ The International Rare Disease Day Facebook Page: https://www.facebook.com/rarediseaseday/⠀ ⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ ⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #heds #loeysdietzsyndrome #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility (at Hypermobility Connect)

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hypermobilityconnect-blog · 6 years

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☕️ How did you engage in self-care this weekend? What did you do that was "looking after you"?⠀ ⠀ We'd love you to share so that others can learn from your ideas. Sometimes one of the hardest things for us to do is simply be & look after ourselves.⠀ ⠀ Sharing is caring 💛⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ #selfcare #metime⠀ #hypermobility #hypermobilityspectrumdisorders #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #heds #loeysdietzsyndrome #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #spoonie #zebra #chronicillness #pots #dysautonomia #chronicpain #chronicfatigue #mybendybody #hopeforhypermobility⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 6 years

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Can you relate? 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)

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hypermobilityconnect-blog · 6 years

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Somedays I agree with this. Somedays I struggle to find my claws. It's hard going, this whole living with a chronic life-long condition thing... isn't it? ⠀ ⠀ But I think even with broken wings, we put up a hell of a fight... and we will continue doing so... because... well, that's who we are! ⠀ ⠀ Are you with me?⠀ ⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ ⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #heds #loeysdietzsyndrome #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 6 years

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I say: Exactly what she says.⠀ ⠀ Daniell Koepke is a very wise soul.⠀ ⠀ So much truth. ⠀ ⠀ It's OK. It's OK.... It's really OK.⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ @daniellkoepke ⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 6 years

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Give yourself #permission.⠀⠀ ⠀⠀ 💜 Do you give yourself permission to be you - hypermobility/EDS/diagnosis and all? ⠀⠀ ⠀⠀ 💛 Do you struggle with this?⠀⠀ ⠀⠀ ⠀⠀ ⠀⠀ ⠀⠀ ⠀⠀ ⠀⠀ ⠀⠀ ⠀⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 6 years

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#MotivationMonday⠀ 🔆 You never know how many people you may be a lighthouse for. ⠀ ⠀ Keep shining your light.⠀ ⠀ Keep sharing your story.⠀ ⠀ Keep being you.⠀ ⠀ Keep going. ⠀ ⠀ Because you help more people than you realise, and will ever know. ⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ ⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 7 years

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I'm a person.⠀ ⠀ I have an illness.⠀ ⠀ I am NOT my illness.⠀ ⠀ My illness does not define me.⠀ ⠀ 💜 I prefer to say "I live with a chronic health condition".... What about you? 👇⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ ⠀ ⠀ ⠀ ⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 7 years

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📌 #MentalHealth - a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community (WHO, 2001).⠀ ⠀ Today is World Mental Health Day. ⠀ ⠀ 💙 How are you feeling?⠀ ⠀ ⠀ ⠀ ⠀ ⠀ #hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀ (at Hypermobility Connect)

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hypermobilityconnect-blog · 7 years

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Sunday Soul Food 🐛 🦋 🐝⠀ ⠀ #hypermobility #hypermobilityspectrumdisorders #theehlersdanlossyndromes #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility (at Hypermobility Connect)

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hypermobilityconnect-blog · 7 years

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Motivation Monday ⭐️⭐️⭐️ #goals #hypermobility #hypermobilityspectrumdisorders #theehlersdanlossyndromes #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility (at Hypermobility Connect)

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hypermobilityconnect-blog · 7 years

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Sunday Soul Food 🐛 🦋 🐝 #hypermobility #hypermobilityspectrumdisorders #theehlersdanlossyndromes #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility (at Hypermobility Connect)

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