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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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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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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 · 6 years

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Key Turner⠀ ⠀ Using keys can be a real struggle for some people. The forearm supination (turning) and the grip strength can be a big problem, but just the stability of the wrist and hand can also be a massive issue for people with hypermobility. The key turner is great because it gives you something bulkier to hold onto, instead of that tiny little, thin key, making it easier to grip and therefore use less force.⠀ ⠀ ✅ This product is great for people with:⠀ - poor lateral prehension (key grip) strength⠀ - decreased hand strength⠀ - wrist instability or pain or post-operative⠀ ⠀ ❌ Downside:⠀ - they usually only fit 3-4 keys, so if you’re like me and have too many, it may not work for you⠀ - they are bulkier than keys alone (pro is that they’re easier to find).⠀ ⠀ 💻 You can find it: Online or at your Independent Living store⠀ ⠀ ⠀ ⠀ ⠀ ⠀ #HypermobilityHelpSeries #GeneralAids⠀ #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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No words necessary 😂 I almost wet my pants when I saw this - totally describes my life. ⠀ ⠀ Does it describe yours as well? 👇⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ ⠀ #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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#TakeHeart Tuesdays 💛💛💛 "You are NOT a burden" 💛💛💛 #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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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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