DM me for the Zoom info! #loeysdietz #loeysdietzsyndrome #loeysdietzsyndrometype2 #marfans #connectivetissuedisorder #migraines #migraine #migraineawareness #babeswithmobilityaids #servicedogs #hypermobility #hyperthyroidism #migrainessuck #migrainesupport #migrainelife #loeysdietzsyndromefoundation #adhd #adhddinosaur #executivedysfunction #executivefunction #adhdhacks #comorbidities #mindovermars https://www.instagram.com/p/CkIeim3uXpZ/?igshid=NGJjMDIxMWI=

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)

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

Something a bit different...

Hello cyberspace! So here's the thing, our blog is generally about the really lovely things in life. Culture. Something that people take a great deal of enjoyment in whether it's the amazing food they're eating, eye candy, ear candy, or beautiful design. While all of these things are fabulous, which is what this blog is all about, I wanted to shed light on an issue that doesn't glitter as much as all the gold we usually feature but is more important than all of it.

It starts with this- while travelling on a train two weeks ago I met an adorable five year old girl and her grandmother who were travelling home. We had a friendly chat and I ended up finding out that this clever, lovely, little girl had Loey's Dietz Syndrome. A genetic syndrome that fuses together tissues and causes various disabilities in children mentally and physically. Some of the effects of the degenerative syndrome are; clubbed hands and feet, spinal tissue becoming fused together (making it difficult and extremely painful for those affected to properly sit or stand), lowered immunity, lowered cardiac function, and most fatally, enlargened aortic valves that could, in some cases, be fatal if they rip apart. I learned that LDS is a fairly new syndrome and so not everything is known about it- which is why research is vitally important for the diesase

Thinking about all of this and looking at the girl, I couldn't stop the tears from coming to my eyes as she asked, in earnest, if she could participate in sports and being told by her grandmother that golf and bowling were her only options. Still, the beautiful little one who has undergone somewhere between 8-10 surgeries in her precious 5 years of life, was excited, full of verve, and couldn't wait to go bowling the next weekend. It is not only this girl who was remarkable, but her grandmother as well who has started the first and only LDS Foundation Canada in order to "encourage education, foster research, and provide support for those impacted with LDS." To say that the story of grandma and granddaughter touched me is an understatement. It motivated me to learn more, to want to help, and to want to share the story so that I may motivate at least one person to go find out more as well. Please visit http://www.loeysdietz.org/index.php to learn more about LDS and find out how you can help.

- K.B.

Ever have that one fabulous day where all your comorbidities actually play nicely and you feel decent enough to do your hair, makeup, etc? Today’s that day for me. 😂 Sporting my cute compression socks too!! #loeysdietz #loeysdietzsyndrome #loeysdietzsyndrometype2 #marfans #connectivetissuedisorder #migraines #migraine #migraineawareness #babeswithmobilityaids #hypermobility #hyperthyroidism #loeysdietzsyndromefoundation #lorysdietzawareness #adhd #adhddinosaur #executivedysfunction #executivefunction #adhdhacks #rsd #rejectionsensitivedysphoria #comorbidities #mindovermars https://www.instagram.com/p/CkL1CPxu5R0/?igshid=NGJjMDIxMWI=

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)

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)

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)

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)

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)

#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)

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)

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)

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)

📌 #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)

#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)