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#Repost @ehlers.danlos (@get_repost)
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The United Nations recognizes 3 December as the International Day for Persons with Disabilities. This observance "aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life." A few facts from the UN:
-Over 1 billion people in the world have some form of disability, that’s 1 in 7
-50% of disabled persons cannot afford health care
-80% of all people with disabilities live in a developing country

How do your country and community ensure equal rights and protection for persons with disabilities? What could they improve? What can you do to advocate for these changes? Take a moment today to discuss this with your social networks.
You can view the UN's International Day of Persons with Disabilities resources here: http://www.un.org/en/events/disabilitiesday. #Disabilities #PersonsWithDisabilties #UN #Advocacy #DisabilityRights #EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain

Proud to say we’ve launched our Freephone helpline number today for Vascular EDS support, it is 0800 917 8495 #annabelleschallenge #vasculareds #charity #vEDS

Hey y'all! I'm pleased to invite you to see an advanced screening of my film about Bonnie Wheeler.
DEFINE:ALIVE | A documentary about Vasculer Ehlers Danlos Syndrome, living while dying, and learning to dream - not just in spite of a diagnosis, but because of it. (20-30 minutes)

See an advanced screening tomorrow at Smith College, in Stoddard Hall's Stoddard Auditorium at 7:30pm.

Other select projects from Five College film students will be screened. Refreshments will be served. Free of charge, open to the public. Enjoy the show, & hope to see you there!

#veds #documentary #film

backstage at #VEDS for @ceciliarosellofficial

Whoop!! The new cards arrived early! #dyslexia #vEDS #cEDS - a week earlier than I was expecting them :)

Now, this deserves to be remembered: Oct the 24th, woolly sweater, swimsuit, diving suit in my bag and I'm ready to catch back my freedom by working out on the beach. GET STRONGER, BABY, GET STRONGER. I can make it, I will get better, I'll endure till the end! #ehlersdanlos #ehlersdanlossyndrome #zebrafamily #vasculareds #veds #vascularehlersdanlos #smiletherapy #smilethroughthepain #findacure #helptheresearch #saveme #cureme #spreadtheword #ehlersdanlossyndromeawareness #ehlersdanlosawareness

#tired. saw a doctor that knew what #EDS is. He said I possibly have #VEDS along with #hEDS

Repost: Wanted to start new ig for my #spoonielife I don’t like sharing #spoonie stuff on my main ig! Plus im soon finally starting new path on trying to help my #veds so I would like document it! #beadsofcourage #beadstrong

Dah ada yang fly pun benda ni tak siap siap.

#quinsturnseven #veds

MOST RECENT

Sad but true for so many, sending strength and love to those who need it and many many #rainbow colored #unicorns #angelsquad #edsAwareness #vedsAwareness. #chronicallyill #eds #veds #pots #potssyndrome #dysautonomia #ehlersdanlossyndrome #lifeofpain #youcandoit

What's on your bucket list?
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This is mine. Words born from a message that God laid on my heart just before Vascular Ehlers-Danlos turned my world upside down. It's a message about being ready to face the unknown, found in the pages of Joshua.
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I had always dreamed of writing a Bible study, but I never thought it would actually happen. And now that it's real, I can look back and see all the places where God had already walked before me to make it happen. So my question to you today is the same question I should have asked myself 12 years ago.
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Why not?
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If God places dreams in your heart, you should listen to them. Don't worry about messing His plan up. You can't. He'll either replace those dreams with something else or He'll run so wildly with them that you find yourself laughing out loud with pure joy at the fact that you get to do this thing with Him. .
Either way, the point is to move forward. Toward your bucket list. Toward His plans for you. Resist the temptation to ask "why" and start asking "why not." Take a step forward into the unknown and wait for God to meet you.
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Because the reality is He's already there.
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#linkinbio #readystudy #Biblestudy #Joshua #bucketlist #bucketlistliving #toetowater #putmeonthefrontline #rescuedletters #veds #devotional #seekHimfirst #shereadstruth #morningprayer #wellwateredwomen #readthroughtheBible #butfirstJesus #intheword #womenintheword #womenoftheword #biblestudy #coffeeandJesus #powerofprayer #intheword #Biblestudymoments #biblestudytime #godsword #scripture #bible

EDS is waking up in the morning already exhausted and ready for bed, but thankful to live another day. EDS is trying to get up while your fragile skeleton fights you. EDS is a constant battle between your mind and your body, but you just keep going anyways. With every step and every movement there is no comfort. You no longer describe it as pain because you have know idea what it feels like to not have pain. It is simply normal. Everyday I will get stronger💪🏼 EDS may be a major part of me, but it doesn't define me. It has given me the opportunity to see the world in a different light💙 #EDS #VEDS #spinalinstability #spinalcordinjury #dysautonomia #zebrastrong

🦓❤️🦓 Listening can be the best medicine.

Super cute to watch my youngest go out on rollerskates for the first time...also nerve racking since his medical condition makes him fragile...but you can't stop living. One day there will be a cure for vEDS, I just hope it comes in his lifetime. #CRISPR #Findacure #vEDS #VascularEhlersDanlos #rollerskating #livinglife #hope

What every new mum wants to read 👍🏻👍🏻 #vascularehlersdanlossyndrome #veds #ehlersdanlossyndrome #eds #ehlersdanlos

This is a good day. It’s a cold rainy day full of tests and x-rays for my daughter. It’s a good day. See the happiness, see the joy that one more test can mean to others. When you pass by the glass of this waiting room and see her sleeping on my shoulder, see the positive . See this is a good day for us. Choose happy.
#raredisease #mcad #genectictesting #pots #eds #veds #autonomicsystem #posturalorthostaticsyndrome #ehlersdanlos #sensoryneuropathy #focalseizure #spoontheory #spoonies #research #secondarytowhat #findingthecause #keeplooking #autonomicnervoussystem #nothingtodowithbeingnervous #circulatorysystem #osmosisjones

It's time! Livestream the NYIT EDS Patient Symposium all day here: kaltura.com/tiny/k5eeb
For more info on this event, including today's full schedule, go here: bit.ly/2kEaGs6

#NYIT #Symposium #EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain

"Йога не является религией или догмой для какой-то одной культуры. Хотя она и произросла на индийской земле, это универсальный путь, открытый для всех, вне зависимости от их происхождения.
Все мы прежде всего люди, но привыкли думать о себе как о европейцах или азиатах. Наедине с самим собой человек был бы просто индивидуальностью, а не американцем, индусом, африкаанцем или европейцем. Но душа, или, как иначе я её называю, "провидица", устроена у всех одинаково, вот только покров её отличается. Представления о себе, которых мы придерживаемся всю жизнь, создают между нами барьер, йога же помогает его разрушить. Когда встречаются "я" и "ты" - забываются культуры и классы,и души общаются между собой без преград. Наши глубинные нужды очень похожи,ведь все мы люди и все мы смертны".
Б.К.С. Айенгар
#yoga #yogalife #fullmoon #allworld #happy #halth #organicwoman #ayengar #veds #europeanaziatsamericansarsbspersiansindians #allpeoples #tobefree #bekind #yogi #love #breathtakingviews

Appreciation post: that list has gotten a lot longer thanks to all of you! 👏🏼👏🏼👏🏼Thank you for allowing me to express myself, my struggles, my triumphs, and even my sarcasm with you guys. This platform has been so therapeutic for me. I’ve gained so much insight into my own chronic illnesses bc of the fact that you guys share yours with me, as well. It’s truly such a supportive community. Cheers to you guys and to the fact that none of us have to go through it alone. 👏🏼👏🏼👏🏼 .
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#sickerthanyouraverage #strongerthanyouraverage #dontstopgetitgetit #spoonie #spooniecommunity #chronic #chronicillness #pain #chronicfatigue #chronicallyill #disabled #eds #classicaleds #heds #veds #hypermobility #migraine #pots #pcos #lyme #lupus #crps #ddd #me #ibd #ibs #depression #anxiety #thrivingandsurviving #lifehacksforchronicillness

Hey y'all! I'm pleased to invite you to see an advanced screening of my film about Bonnie Wheeler.
DEFINE:ALIVE | A documentary about Vasculer Ehlers Danlos Syndrome, living while dying, and learning to dream - not just in spite of a diagnosis, but because of it. (20-30 minutes)

See an advanced screening tomorrow at Smith College, in Stoddard Hall's Stoddard Auditorium at 7:30pm.

Other select projects from Five College film students will be screened. Refreshments will be served. Free of charge, open to the public. Enjoy the show, & hope to see you there!

#veds #documentary #film

Emergency rooms are a last resort. I got there. After a huge needle jammed into my thigh, I was able to get ahead of the pain again. So thankful for ER docs that actually read your file and know about your disorder. #crippledbitch #er #emergencyroom #ehlersdanlossyndrome #fallrisk #legssaidnope #ddd #eds #fall #fibromyalgia #imahottmess #sidysfunction #tumors #spinaltumors #veds #wheelchair #xrays #zebrastrong

We have all been there. An awkward situation. A death? There are generic formalities for that and its final.
Chronic incurable illness? Not so much. Alot of people want to suggest things to "fix"you. There suggestions are well meant but mostly make us feel more alone. It is more isolating to have someone suggest something when they haven't researched your condition enough to understand there suggestion is obsolete.
So what do you say to someone with a chronic illness? I'm sorry, how can I best support you? That simple response creates validation and understanding.
Many of us with chronic illness feel alone and do not want to download anyone who asks how we are doing. We grieve our losses in layers slowly until there are no more tears and we figure out how to go on.
Stripped naked of all we once were looking for glimmers of hope and support. Our friends and family don't know what or how to say all the things.... They are grieving too!
I'm sorry, how can I best support you? I think is the best response.
What do you all think?
#ehlersdanlosawareness #chronicillness #heds #ehlersdanlos #veds #chiari #caregiversupport #chronicallyfabulous #invisableillness #supportforfighters #mentalhealth #pots #spoonie

Rich Soul#Veds

Please, educate yourself. There are so many people suffering from EDS and Dysautonomia! Spread Awareness. Spread Love. ❤️❤️❤️
#spoonielife #veds #dysautonomiaawareness #iwantmylifeback #chronicillness #chronicbadass

from @awareness4eds - #EDS #vEDS = More Awareness Needed - #zoestribe

🦓 You May See Me Struggle But You’ll Never See Me Quit 🦓

It’s crazy how EDS and hyper-mobility show up in almost every picture after you know what to look for. .
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*I’m the one wearing the multicolored paisley boot on the leg that is hyperextended and twisted awkwardly but naturally at the same time* I wonder if I had hip, knee, or leg pain the day after this picture and couldn’t figure out why? It was probably bc I threw my leg up in what felt like a natural pose when in reality I was twisting and hyper extending things. My leg is across my other leg, under my friend’s legs, then back on top of my other friend’s legs with my foot pointing towards the wall. Sounds insanely painful when I put it like that but I’m sure that I didn’t feel a thing in the moment bc of how “elastic” I am. It’s so crazy how much more aware of my body mechanics I am as I have adjusted to living with EDS over the years... And realizing your invisible illness isn’t always that invisible 🧐
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🌱Life Hack🌱 : when you’re looking through photos take a moment to realize your body mechanics. We are often standing in end range when we should be standing in mid range, overreaching, or hyperextending, and recognizing it can remind us not to do so in the future. Every movement counts with chronic illness. .
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P.S. my third post ever on this account is about body mechanics - scroll down to read it and to see an insanely hyperextended me in the picture. Give it a ❤️like❤️ if you think I should repost it for my new followers to read
P.S.S. Love it when fb reminds you of a memory other than one from your awkward teenage years 👯👯 P.S.S.S. Where’s the bendy person #emoji ?
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#bodymechanics #chronic #chronicillness #pain #chronicfatigue #chronicallyill #eds #classicaleds #heds #veds #hypermobility #migraine #pots #pcos #lyme #lupus #crps #ddd #me #ibd #depression #anxiety #spoonies #friends #dontstopgetitgetit #thrivingandsurviving #strongerthanyouraverage #sickerthanyouraverage #lifehacksforchronicillness

#Repost @ehlers.danlos (@get_repost)
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The United Nations recognizes 3 December as the International Day for Persons with Disabilities. This observance "aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life." A few facts from the UN:
-Over 1 billion people in the world have some form of disability, that’s 1 in 7
-50% of disabled persons cannot afford health care
-80% of all people with disabilities live in a developing country

How do your country and community ensure equal rights and protection for persons with disabilities? What could they improve? What can you do to advocate for these changes? Take a moment today to discuss this with your social networks.
You can view the UN's International Day of Persons with Disabilities resources here: http://www.un.org/en/events/disabilitiesday. #Disabilities #PersonsWithDisabilties #UN #Advocacy #DisabilityRights #EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain

Sharing as this is very near and dear to my heart as someone with Ehlers-Danlos Syndrome. Healthcare shouldn’t be a privilege for the rich. We all need to take care of each other. 🙌💗

#Repost @ehlers.danlos (@get_repost)
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The United Nations recognizes 3 December as the International Day for Persons with Disabilities. This observance "aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life." A few facts from the UN:
-Over 1 billion people in the world have some form of disability, that’s 1 in 7
-50% of disabled persons cannot afford health care
-80% of all people with disabilities live in a developing country

How do your country and community ensure equal rights and protection for persons with disabilities? What could they improve? What can you do to advocate for these changes? Take a moment today to discuss this with your social networks.
You can view the UN's International Day of Persons with Disabilities resources here: http://www.un.org/en/events/disabilitiesday. #Disabilities #PersonsWithDisabilties #UN #Advocacy #DisabilityRights #EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain

The United Nations recognizes 3 December as the International Day for Persons with Disabilities. This observance "aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life." A few facts from the UN:
-Over 1 billion people in the world have some form of disability, that’s 1 in 7
-50% of disabled persons cannot afford health care
-80% of all people with disabilities live in a developing country

How do your country and community ensure equal rights and protection for persons with disabilities? What could they improve? What can you do to advocate for these changes? Take a moment today to discuss this with your social networks.
You can view the UN's International Day of Persons with Disabilities resources here: http://www.un.org/en/events/disabilitiesday. #Disabilities #PersonsWithDisabilties #UN #Advocacy #DisabilityRights #EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain

An hour & a half later and I'm finally back on my jolly lovely hospital bed. PTSD and depression and so on are so hard 😐 #PTSD #depression #heds #veds #ehlersdanlossyndromes #chronicpain #chronicfatigue #zebrastrong

Never thought I'd be looking at urns and ash-holding necklaces or telling kids that their parents or grandparents are dead so many times, or a true orphan, by age 32. Goodnight, mom. Love and miss you lots, Pops. Back to researching urns.... #death #JustTakeCareOfYourselfDammit #DontSmoke #MoveAround #DontEatCrappyFood #NOTFUCKINGHARDPEOPLE #FuckTheVA #ImTiredOfDeath #ActuallyIAmJustReallyTired #BeingAnAdultSucks #SoDoesBeingAnAuntSometimes #TiredOfTeachingChildrenAboutDeath #JustFuckEverythingToday
#AgentOrange #Cancer #brainaneurysm

I fell today. I broke my streak. Dammit. My legs just noped out on me. This little baby snuggled up beside me and got under the blankets. She hasn't left my side since. Kitty therapy is the best. If these meds don't work, though, I'm ER bound. I'm just hoping I didn't break anything (again) #eds #atleastihaveboobs #baldhead #cordflattening #ddd #ehlersdanlossyndrome #fibromyalgia #hystersister #imahottmess #spinaltumors #tumors #veds #wigs #wheelchair #zebrastrong #fall #hitthedirt #thathurt #someonesaveme #chemo #sidysfunction #stupidlegs #nope #kitty #kittiesofinstagram #cattherapy #lovemykitty #cadence

Never miss an update! The Ehlers-Danlos Society is publishing a free weekly newsletter. Sign up today!

bit.ly/EDS-NEWS

#News #Newsletter #EDSNews #EDS #EhlersDanlos #EhlersDanlosSyndromes #EDSAwareness #HSDAwareness #HSD #HEDS #CEDS #VEDS #Hypermobility #ZebraStrong #Spoonie #InvisibleDisability #ChronicPain

#GivingTuesday. My daughter lives with this disease and she is a #warrior #StrongerTogether
Donate to help the Research and all people who suffer from this. @Regranned from @ehlers.danlos - Tomorrow is #GivingTuesday! Consider a gift to The Ehlers-Danlos Society!

The Gates Foundation is MATCHING donations received through Facebook on November 28th! To participate, create a fundraiser on Facebook by going to facebook.com/fundraisers and selecting the Ehlers-Danlos National Foundation.

What do your donations support? Visit ehlers-danlos.com/strategic-priorities/

We can't thank you enough for each and every donation. Our strength begins with hope. Our hope begins with you.

#EDS #EhlersDanlos #EhlersDanlosSyndromes #hEDS #vEDS #cEDS #Spoonie #ZebraStrong #DazzleTogether #ChronicIllness #ChronicPain #HSD #Hypermobility #Donate #Giving - #regrann

#Repost @ehlers.danlos ・・・
It’s #GivingTuesday! Consider a gift to The Ehlers-Danlos Society!

The Gates Foundation is MATCHING donations received through Facebook on November 28th! To participate, create a fundraiser on Facebook by going to facebook.com/fundraisers and selecting the Ehlers-Danlos National Foundation.

What do your donations support? Visit ehlers-danlos.com/strategic-priorities/

We can't thank you enough for each and every donation. Our strength begins with hope. Our hope begins with you.

#EDS #EhlersDanlos #EhlersDanlosSyndromes #hEDS #vEDS #cEDS #Spoonie #ZebraStrong #DazzleTogether #ChronicIllness #ChronicPain #HSD #Hypermobility #Donate #Giving

Proud to say we’ve launched our Freephone helpline number today for Vascular EDS support, it is 0800 917 8495 #annabelleschallenge #vasculareds #charity #vEDS

Tomorrow is #GivingTuesday! Consider a gift to The Ehlers-Danlos Society!

The Gates Foundation is MATCHING donations received through Facebook on November 28th! To participate, create a fundraiser on Facebook by going to facebook.com/fundraisers and selecting the Ehlers-Danlos National Foundation.

What do your donations support? Visit ehlers-danlos.com/strategic-priorities/

We can't thank you enough for each and every donation. Our strength begins with hope. Our hope begins with you.

#EDS #EhlersDanlos #EhlersDanlosSyndromes #hEDS #vEDS #cEDS #Spoonie #ZebraStrong #DazzleTogether #ChronicIllness #ChronicPain #HSD #Hypermobility #Donate #Giving

Fast in, fast out: I've been hospitalised for a quick infusion due to an infection who has been running through my body for too long. So, so happy to be home already!!! YAY! Celebrating with the cuddles one of my oldest plushy dogs (1978). #ehlersdanlossyndrome #zebrafamily #vasculareds #veds #vascularehlersdanlos #smiletherapy #smilethroughthepain #findacure #helptheresearch #saveme #cureme #spreadtheword #ehlersdanlossyndromeawareness #ehlersdanlosawareness #breastcancer #fuckthecancer

🦓 Don’t Give Up! And Don’t Hesitate To Ask For Help! 🦓

#pmjtour #postmodernjukebox was amazing last night. Those voices give me goosebumps and those women are stunning! I truly needed out of the house. I just wish their wheelchair seating was somewhere you could see everything. #pmjtour2017 #wheelchairboundbitch #wheelchairseating #notexactlyaccessible #baldhead #nowig #bestgiftever #tumors #spinaltumors #eds #atleastihaveboobs #blessed #cordflattening #ddd #ehlersdanlossyndrome #fibromyalgia #hystersister #imahottmess #policewifelife #veds #wigs #zebrastrong

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