EhlersDanlosSyndrome

Pictures about EhlersDanlosSyndrome

Tomorrow is my 2nd birthday, and yesterday we celebrated! 🎉🎈 My hoomans spoiled me with a fun day full of new toys and special treats. 😋🍰 They ensured I had a great day because IGuess the toxic food ingredient in this packaged food item. insta topsy.oneSay hi to my new friend! 👋🏼 My appointment with the surgeon went so well this morning - definitely worth the three hour drive! He is knowledgeable about #EDS and agreed arthroscopic hip surgery is my best course of treatment. Surgery will probably be next month, after which IYesterday I had a follow up with my GI, we are both thrilled with how well IGINGER CHEWS!!! Mom bought these for me to try😊🍬...soooo yummy!! only one im not going to eat are the peanut ones. Not too crazy plus peanuts gives me a reaction🙊.
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T-minus 7 days till double scope procedure😦🏥!!! Then going to see dr a week after to start treatment. 👉If anyone has input on the best IBD meds with least side effects, please share!!!
Im hoping my dr might change his mind. I really dont wants to have to go through the infusions. Especially that the hospital is an almost 2 hour drive. Anyways, im loving this cooler weather!!🙆💕🍃 its making POTS symptoms way easier to manage. I just wish i could get my nausea under control. Im on Zofran and tramadol to manage it and chronic joint achy pain. Only problem is im always a little drowsy. Go figure😛 lol well i hope your days went well. Sending hugs to all you fighters!!😘💓👐
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#vegan #healthy #healthyfood #sweet #glutenfreefollowme #paleo #food #chronicillness #invisibleillness #anarecovery #edwarrior #strongnotskinny #edrecovery #edfighter #ehlersdanlos #ehlersdanlossyndrome #crohns #ibd #ibdawareness #colitis #inflammatoryboweldisease #autoimmunedisease #gastroparesis #tubie #dysautonomia #prorecovery #edfam #chronicpain #tuesday insta topsy.oneActually got the right zipper finally so I could finish up this #clemenceskirt (a pattern from @tillybuttons #loveatfirststitch book) which was actually technically one of my very first makes! I thought it was going to be a pretty dodgy make in the end as when I started it I was in a lot of pain and on a LOT of meds just before being hospitalised so this is the only make of mine I🍑🍑🍑
IDecía Sancho al Quijote en su andar imaginario: mi señor, porque tanto empeño en seguir si ya todo está perdido, además mi Señor, los perros ya nos delatan"
Y en una Quijotada le responde: "no pierdas la fe mi fiel Escudero, que la llegada está próxima y los amos del Valle lo saben, y si los perros ladran, no te preocupes eso significa que estamos avanzando." ________
💓Ayúdame a llegar a la @mayoclinic , comparte mi historia en Facebook: 
www.gofundme.com/superarlensiu
#superarlensiú
#mienfermedadinvisible 
#ehlersdanlossyndrome insta topsy.oneLook what I made, it#ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanlos #EDS #potssyndrome #POTS #mastcellactivationsyndrome #mastcellactivationdisorder #MCAS #marfanoidhabitus #marfanoidsymptons #dysautonomia #chronicpain #chronicillness #csfhypovolemia #zebra insta topsy.oneSPOONICORNS... That time I was in Melbourne for a work conference & spotted this mask in a shop window. 
Naturally I spent the rest of the day galavanting around the city with a friend, unicorning.
Because, of course. 🦄
UnicornsAcrossMelbourne
CYeah definitely not #hypoallergenic. It made my skin feel like I bathed it in jalapeño juice. #mcas #mcad #eds #zebrawarrior #allergies #allergicreaction #chronicillness #ehlersdanlossyndrome insta topsy.oneFeel so naked without my piercings. 😭 #l4l #brighthair #piercings #makeup #smile #Glasgow #ehlersdanlossyndrome #chronicillness #chronicpain #chronicfatigue insta topsy.oneStill waiting to see the Urologist 😩 had 3 hours sleep and IThis weeks Ask A Spoonie is now on Chronic Connections YouTube Channel. I chat about achievements in chronic illness and tell you about a technique I was recently taught by a doctor in regards to weighing up your achievements. Let me know what you think...🎥♿️✨ Link in bio @my_chronic_connection (Lack of posting has completely messed up my algorithm but, hey ho, I hope those of you who need to hear this message will find this video.) ❤️ insta topsy.oneRed kidney beans, ackee, brown rice, sweetcorn and spring onions - cooked with whole cloves, garlic, ginger, thyme. IHeadless bikini woman lol I am proud of my EDS body. Every imperfection is just fine by me. #beach #softestbikinisever #bikini #sunnyday #summer #lake #minnesota I need a selfie stick so I can get my head in the pic. Lol #favoritebikini #heaven #zen #peace #calm #peaceful #mothernature #proudofmyedsbody #eds #ehlersdanlossyndrome #happy #content #woman #beauty insta topsy.one#imback @thecastleclimbingcentre still not fit to train but docs took pity on me and my climbing withdrawal symptoms so I get to go play on the wall tonight! Worst case IWhat a morning it has been!! Already four doctors appointments, two more diagnosis, and an X-ray, not bad for 12pm!! #thehopefulchronic #spoonie #pots #gp #xray #hospital #believe #hope #doctor #test #spooniewarrior #spooniestrong #cfs #cfsstrong #health #sickchick #lifestyle #blogger #blog #photography #london #fibromyalgia  #chronicillness #chronicpain #lupus #connectivetissue #eds #ehlersdanlossyndrome #ms #me insta topsy.oneÄntligen passar jeansen som har fått bo i garderoben sedan augusti 2016! 🎉 Bara en liten bit kvar tills all mirtazapin-vikt är borta och mina mål-jeans passar igen (stackarna som har varit i garderoben i nästan ett helt år). 👍#ehlersdanlossyndrom #viktnedgång
Finally the jeans that has lived in the wardrobe since august 2016 fits! 🎉 Only a little bit left until all the mirtazapine weight is gone and my goal jeans fits again (the poor things thatShe wonAfin de soutenir les recherches de la maladie Ehlers-Danlos dont je suis atteinte, et soutenir lelephants everywhere 🐘 hoping they can raise my spirits 🐘🌻 insta topsy.oneI did a thing. I have wanted #rainbowhair since I was in elementary school. Dying my hair has been my #therapy throughout this whole chronically fabulous journey. Happy #pride month y

Best tweets:

Bill Coon 28/06/2017 01:34
Here it is! @PYSKpodcast is now live! Ep 1 discusses #ehlersdanlossyndrome with Megan King! https://www. billcoonspeaks.com/pysk/ehlers-da nlos   … #EDS @TheEDSociety
http://pic.twitter.com/PMbKdousIH
Here it is! @PYSKpodcast is now live! Ep 1 discusses #ehlersdanlossyndrome with Megan King!   https://www. billcoonspeaks.com/pysk/ehlers-da nlos   …  #EDS @TheEDSociety<br>http://pic.twitter.com/PMbKdousIH

Childhood energy and resiliency doesn’t last, however. I’m 35 now, and I live with Ehlers-Danlos syndrome (EDS), hypermobility type. Day to day life is a careful series of steps and choices in order to make sure I can manage through the day.
sarina 28/06/2017 12:50
Today I met the lovely Christina. She has #EhlersDanlosSyndrome and also has a great YouTube channel! So happy I got to meey her. #spoonies
http://pic.twitter.com/D4scaSbdoA
Today I met the lovely Christina. She has #EhlersDanlosSyndrome and also has a great YouTube channel! So happy I got to meey her. #spoonies<br>http://pic.twitter.com/D4scaSbdoA
For Brant Badger, there are extra hurdles. Badger, now 17 and about to be a senior at Henryville, was diagnosed with Ehlers-Danlos Syndrome (EDS) at 14. EDS is a connective tissue disorder characterized by hyper-mobile joints, hyper-extensive skin and ...
Digesting the Facts 27/06/2017 05:16
At the MA State House today preparing to testify in support of a bill to create a Rare Disease Council! #raredisease #EhlersDanlosSyndrome
#weekend #bus #city #style #blackonblack #latergram #latepost #instaphoto #night #adventure #vibes #ehlersdanlosawareness #ehlersdanlossyndrome #effyourbeautystandards #effthelabels #inmyskiniwin #mybeautymyway #loveyourbody #loveyourlines #selflove # ...
Lucie Palmer 27/06/2017 01:50
#EhlersDanlosSyndrome positive: I can do some pretty cool, thumb to arm tricks Negative: I get loads of pain in every joint imaginable!
When impossible pain is, in fact, possible Wed, 28 Jun 2017 04:06:00 GMT
Unknown to me and everyone involved, the anesthetic was completely ineffective. This is one of the more peculiar symptoms of Ehlers-Danlos Syndrome (a genetic connective tissue disorder), but I was not to be diagnosed for another four decades. I was in ...
TheZebraTheory 27/06/2017 01:45
Chronic wrist injurys and instability are common in patients with #EhlersDanlosSyndrome #wristpain http://www. healthline.com/health/tenosyn ovitis#overview1   …
Hannah Barham-Brown was studying at medical school when she was diagnosed with Ehlers-Danlos syndrome two years ago. The inherited condition leaves her joints weak and susceptible to dislocation. It means she has to rely on a wheelchair a lot of the time.
Science-George 26/06/2017 09:22
Info from @docmmiller on #EhlersDanlosSyndrome 2/3 @TheRealDaniYell @CourtneySimonds @ClaireSaul1 @AScottishWriter @TheSciBabe @TweetingEDS https:// twitter.com/docmmiller/sta tus/879352473764454403   …
Always vital to find your #RareDisease tribe, including #EhlersDanlosSyndrome #POTS #MCAS #EDSZebra patients; we're most powerful together https:// twitter.com/edsawareness1/ status/874033705421070336   …
Brittany 26/06/2017 03:30
Not long left on this #EhlersDanlosSyndrome giveaway! asouthernceliac.com/ehlers-danlos- syndrome-awareness-giveaway/   …
Dr. Mark JS Miller 26/06/2017 03:05
The #EhlersDanlosSyndrome #Fibromyalgia & Postural Orthostatic Tachycardia Syndrome community could use some help. Maybe this is the way? https:// twitter.com/GlobalGenes/st atus/879353817497776128   …
Dr. Mark JS Miller 26/06/2017 02:55
Hospitalized pts with #EhlersDanlosSyndrome have a higher incidence of #cerebrovascular events bit.ly/2taUhh7   @edsandme @Ver_EDS
http://pic.twitter.com/G3Qmnw1VSB
topsy
Dr. Mark JS Miller 26/06/2017 02:52
Postural complications of #EhlersDanlosSyndrome may be corrected by compression garments bit.ly/2tdxIZP   @themdphdisin @sherrig108
http://pic.twitter.com/WLBraRjiYL
Postural complications of #EhlersDanlosSyndrome may be corrected by compression garments  http:// bit.ly/2tdxIZP      @themdphdisin @sherrig108<br>http://pic.twitter.com/WLBraRjiYL
Alice Lawson 25/06/2017 08:57
Anyone have tips 4 shoulder/rotator cuff subluxation? Can pop it back but it's not staying for long. Killing my sleep. #EhlersDanlosSyndrome
ace ratcliff   ♿️ 25/06/2017 06:00
ehlers-danlos skin is so fragile. this is what happens from washing my face with a washcloth #eds #EhlersDanlosSyndrome
http://pic.twitter.com/T2CEur51bJ
ehlers-danlos skin is so fragile. this is what happens from washing my face with a washcloth #eds #EhlersDanlosSyndrome <br>http://pic.twitter.com/T2CEur51bJ
Tullyboi66 24/06/2017 11:22
#KeepTalkingMH #CPTSD #anxiety #pots #EhlersDanlosSyndrome Please support my GoFundMe campaign: https://www. gofundme.com/service-dog-fo r-lauren-ptsdanxiety?pc=tw_co_dashboard_a&rcid=9553358d10ab47a782da69791b3afb2d   … @gofundme
http://pic.twitter.com/bCx0zsZHzf
#KeepTalkingMH #CPTSD #anxiety #pots #EhlersDanlosSyndrome  Please support my GoFundMe campaign:  https://www. gofundme.com/service-dog-fo r-lauren-ptsdanxiety?pc=tw_co_dashboard_a&rcid=9553358d10ab47a782da69791b3afb2d   …  @gofundme<br>http://pic.twitter.com/bCx0zsZHzf
GP WARRIOR 23/06/2017 09:34
How many times have I heard this?lol #gastroparesis #pots #mals #EhlersDanlosSyndrome #fibromyalgia #mcas #cfs #neurogenicbladder #spoonie
http://pic.twitter.com/5TMWNvhryQ
How many times have I heard this?lol #gastroparesis #pots #mals #EhlersDanlosSyndrome #fibromyalgia #mcas #cfs #neurogenicbladder #spoonie<br>http://pic.twitter.com/5TMWNvhryQ
EDS UK 22/06/2017 11:33
What a lovely idea! http://www. cambridgeindependent.co.uk/news/cambridge /cambridge-sixth-former-lucy-stafford-spreads-bundles-of-love-from-her-hospital-bed-1-5063155   … #EhlersDanlosSyndrome
Alison The CBDiva 21/06/2017 10:52
TFW you don't know whether that major adjustment was a dislocation or a relocation! #EhlersDanlosSyndrome
http://pic.twitter.com/ymHXFU5lH2
I AM #RareDisease 21/06/2017 09:42
@onetoughnerdthe #AHCA hurts MI #raredisease patients who rely on quality coverage. We deserve better. #NoAHCA #EhlersDanlosSyndrome
łauren ❁ 21/06/2017 09:24
thank you @GreysABC for including a case of #EhlersDanlosSyndrome - this chronic illness has made me weak, but also a fighter #zebrawarrior
A Chronic Voice 21/06/2017 10:40
“Ppl w #EhlersDanlosSyndrome often relate to this story...slightest touch can hurt”: buff.ly/2rLOiQi   (by @mystripylife) #chronicpain
http://pic.twitter.com/xqJ3AqUvkf
“Ppl w #EhlersDanlosSyndrome often relate to this story...slightest touch can hurt”:  http:// buff.ly/2rLOiQi      (by @mystripylife) #chronicpain<br>http://pic.twitter.com/xqJ3AqUvkf
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