EhlersDanlosSyndrome

Pictures about EhlersDanlosSyndrome

CLC MEMBER FEATURE: Hi, my name is Laura. I’m 21 years old and I’m from New Hampshire. I work as a paramedic and I was diagnosed with Crohn’s Disease. My symptoms started three years ago just before my senior year of high school. I would have horrible abdominal pain, random fevers, and episodes of overwhelming fatigue. I thought it was just anxiety since I had a lot in my plate, but last year my symptoms got even worse. I was passing out, losing weight, and I would have days where I couldn’t even climb a flight of stairs. Unfortunately my doctors and myself continued to treat it like it was in my head. I was working 100-140 hours a week, going to school, and training for a triathlon so I didn’t have time to be sick.
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However, in the beginning of March I went to the ER after my fever wouldn’t go below 102 and the debilitating I was experiencing continued for over a week. I was diagnosed with a perforated appendix. I had surgery and thought it was all over; I’d get better from there and the battle over. Little did I know I would spend the next month in and out of the hospital. It got to the point where I couldn’t even roll over in bed for them to check lung sounds. One resident surgeon convinced the other doctors to do a colonoscopy to check for crohnHappy Thanksgiving everyone ! Last year, I was so sick that I spent all day on the couch taking strong pain killers and eating Jello (as seen in that last picture), so to be able to fully participate in the festivities was truly a blessing. Since my body behaved today, I took a walk, I visited a botanical garden, and I made 130 biscuits - check out the size of that mixing bowl. And tonight, I’ll be able to have turkey ! Even though that’s the only Thanksgiving food I’ll be able to eat because of my other digestive system issues, I couldn’t be more excited. And even though I sprang a leak earlier today, I got to take that as an opportunity to teach my cousin all about Olly ! Thanksgiving has always been my favorite holiday because I am surrounded by the people I love, and this year’s celebration is even more special because of the year that I (and therefore all of my loved ones) have gone through. So now it’s time to celebrate and give thanks for many blessings in my life, especially Olly, my family, and this man right here. #mollyollyostomy #ileostomy #ostomy #chronicillness #invisibleillness #nocolonstillrollin #spoonie #ostomates #stoma #ittakesguts #girlswithguts #chronicallymotivated #posturalorthostatictachycardiasyndrome #POTS #dysautonomia #EhlersDanlosSyndrome #EDS insta topsy.oneEnjoying my own Thanksgiving dinner 😂 amino acids yum yum! Happy Thanksgiving everyone! insta topsy.oneHad my post-up appointment this morning with both my surgeon and stoma nurse, which went really well! Because my nurse wanted to check on my stoma (which she put silver nitrate on because of granulomas I have developed), we had to change my bag. Even though I had it changed just yesterday, it feels nice to have a fresh one on, especially since — despite using lubricating deodorant — my output tends to “pancake” (ostomate term referring to output buildup at the top of the bag instead of the bottom). My nurse told me that this shouldn’t really happen with an ileostomy, and that it’s from not drinking enough... Ugh, I really need to get better at that! 🤦🏽‍♀️
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Also, I learned that the order in which I apply all of my ostomy products during a bag change has been totally wrong. 😳 The reason why my wafer never stuck when using stoma powder (to help with my irritated skin) is that I applied it AFTER using barrier wipes, when I’m supposed to put it on BEFORE! Oops! 😅 Well, it’s all still a learning curve and it (as of tomorrow) has only been three weeks since my surgery, so it’s inevitable to make mistakes along the way.
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My surgeon also assured me that the “normal” bowel movements I am still having (out of my other end...) should eventually go away, and that it’s absolutely not from my stoma output traveling into my attached mucous fistula. I really hope that this will subside, because I was afraid of this happening with my colon still intact... 😕
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Overall, it’s been a great (albeit exhausting) day so far! 👍🏼
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#ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome insta topsy.oneThree years ago. The third of seven knee surgeries. Time flies. #eds #edslife #ehlersdanlossyndrome #spoonielife #spoonie insta topsy.one🍂We hope everybody has a wonderful #thanksgiving 🍁with whoever they are thankful for whether that be a🦃 dog or person. #cute #instalike #puppy #instapuppy #puppylove #happy #invisibleIllness #chronicIllness #spoonie #disability #holographic #reflexsympatheticdystrophy #complexregionalpainsyndrome #ehlersdanlossyndrome #chronicpain #instagood #thankful insta topsy.oneHappy Thanksgiving guys! 🦃 I am giving thanks today for all of you 💖 IHappy Thanksgiving everybody! I am very excited, I am going to go to GrandmaHappy Thanksgiving from all of us at Fight Like A Warrior!❤️
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We hope today was filled with good food & loved ones! This is our first Thanksgiving & we have so much to be thankful for! This wonderful family of warriors brings so much joy & inspiration into our lives every single day! #fightlikeawarrior ••••••••••••••••••••••••••••••••••••••••••••••••••••••
What are you thankful for this year? Big or small we want to hear it all! You may even be featured on our story!🙌
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📷: the beautiful @lili.haby insta topsy.oneAnyone else feel this way? 📷: @frank.shoots #ChronicLoveClub insta topsy.onePort progress! I’m fresh out of the shower and my port is healing well. Sorta. Due to my #ehlersdanlossyndrome I heal pretty slowly and oddly. The dr says for me I’m healing okay. I’m getting it used for the first time by December 6th and I’m looking forward to this new chapter in my life. ✨ #rhuematoidarthritis #eds #pots #colitis #gastroparesis #port #recovery #postop #invisibleillness #spoonie #mastcell #fibromyalgia #chronicpainsyndrome #chronicillnesswarrior #chronicfatiguesyndrome #asthma #arthritis #autoimmune #spoonie #surgery #cfs #ibs #cyclicvomitingsyndrome #ibd #disabledandcute #potsie #ra #hypothyroidism #migraine #autoimmunedisease insta topsy.oneguess where i was at 3:23 on the night of thanksgiving?
if you guessed the ER, pop an extra zofran in honor of me. 
i had insane vertigo. for a week straight and it just got worse and worse and worse. 
and, as usual, i got a stroke test and was in and out of the hospital in less than twenty minutes. 
to be real, the car ride home was filled with incoherent screaming. 
i just want care. i just want answers. i’m tired of getting discharged. 
but i’ll hold on. it’s all i’ve for for now.  i have strength. i have hope. 
#ehlersdanlossyndrome #ehlersdanlos #potsie #potsy #potssyndrome #pots #tmj #tmjd #scoliosis #vertigo #vertigosucks #chronicillness #chronicpain #chronicfatigue #er #emergencyroom #hospital #spoonie #sicko insta topsy.oneWe’re at £200!! A few more donations to reach our target of £300 and I can confirm myself , Wayne, Pete, Peter and Joe will ALL dress as superhero’s!! It will be massively appreciated by our club and you might catch a glimpse of Super-Girl, Spider-Man and Batman zooming around Dorney Lake 😅♿️ ⭐️LINK IN BIO ⭐️ #wheechair #wheelchairlife #wheelchairbasketball #basketball #club #disability #sports #event #fundraiser #fundraising #please #givegenerously #raisemoney #dorneylake #race #paraplegic #eds #sci #spinalcordinjury #ehlersdanlossyndrome #supergirl #target #support #volunteer #winter @wayneburton.co.uk @peterrapley @thamesvalleykings_wbc insta topsy.oneThis is a quote that I think about a lot; a motto if you will.  Living with a chronic illness is difficult.  There are often so many things that you want to do but can’t; some days you are unable to do anything at all.  But each day I wake up determined to accomplish just a little bit more than the day before. “There are a million things I haven’t done (yet), but just you wait!” ⭐️ And hopefully some day one of those things will be seeing Hamilton in person! 😂
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This is a repaint of a painting I did a while ago. Im trying to get better at hand lettering, Im still rubbish at it, but I think Im slowly improving.  Lol Shaky hands 👋🏻✍🏻
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#chronicillness #invisibleillness  #chronicpain #zebrastrong #hamilton #butyoudontlooksick #hamiltonart #broadway #ehlersdanlossyndrome #dysautonomia #spoonie #tubie #spinalfusion #musical #alexanderhamilton #spinalfusion #mastcell #feedingtube  #recovery #painting #handlettering #hamiltonart #peoplehopetribe #hamiltonmusical insta topsy.oneWe’re already back in bed... #eds #edssucks #edszebra #ehlersdanlossyndrome insta topsy.oneAnother Consultant Down. Getting discharged always feels like progress. -
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#ehlersdanlossyndrome #hospitaltrip #hospital #progress #dadsofinstagram #hatweather #beard #inspirationalquotes #adidasoriginals #adidas #winning insta topsy.oneIt’s day 1 post op, sorry I haven’t updated everyone yet. Yesterday went fantastic! They were very accommodating for my disabilities, right down to using a specialised cushioned mattress on the theatre table and supporting my knees and hips with pillows and making sure to be very gentle whilst moving me under anaesthesia so as not to dislocate anything. I am in quite a bit of pain and have a lot of bruising but I feel like I’m doing well. They came and removed my dressing this morning and changed me into a surgical bra. I have now been discharged home which I’m excited about as I didn’t sleep well at all last night and fingers crossed I will sleep better in my own bed tonight 😴 I shall let you all know how things progress in the next few days. #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #gastroparesis #zebra #breastaugmentation #mastopexy #breastsurgery #breastimplants #breastlift #boobjob #plasticsurgery #lifewithchronicillness #mystory insta topsy.oneTraining for tomorrow’s semifinal! Backhand 💪. #wheelchairtennis #wheelchairsports #paralympics #rolstoeltennis #tennis #tennispro #tennislife #knltb #backhand #rolstoel #wheelchairlife #ehlersdanlossyndrome #bemmel #doublesmasters insta topsy.oneSanta Cruz Thanksgiving. 🤙🏻🧖🏼‍♀️👙🙋🏼‍♀️💆🏼‍♀️💦 #hottub #thankgodformoistheat #jacuzzi #jacuzzinights I neeeed to own one of these... For my #chronicpain #musclespasms and #ehlersdanlossyndrome insta topsy.oneBe brave. Be strong. Keep fighting. Keep moving forward. #bebraveandstrong #chronicovercomer #fight #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #mg #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick insta topsy.oneI’m ready to get into my bag and head out. But I’ve just seen that it’s snowing! So I better wrap up warm
#hypermobility #hypermobilitysyndrome #ehlersdanlos #ehlersdanlossyndrome #teddybearofinstagram #epilepsy #travelbuddy #teddyontour #asthma #ADHD #christian #plushieofinstagram #chronicfatigue  #invisibleillness #mentalhealth #mentalhealthproblems #instabear #buildabear #depression #wheelchairuser #neurologicalfunctionaldisorder #teddybear  #borderlinepersonalitydisorder #emotionallyunstabledborderlinepersonalitydisorder #BPD insta topsy.oneHappy 50th Birthday to my second Mummy my Beautiful GodMother @jacquelinegaikwad 👸🏽 you are one of the most inspirational ladies in my life! You have constantly been there for me through good times and bad! I wouldn’t be soo strong today if it wasn’t for you! Your support, love, generosity, kindness and everything have all been major parts of my life! I couldn’t have gotten a better GodMother! Your loving bubbly personality and good values is something I always associate you with ! I wish you the happiest birthday and may you continue to receive beautiful blessings and love! Can’t wait to celebrate! Here’s to many more years of amazing memories and happy times 💗 Love you loads, May God always Guide You and Angels be beside you 👸🏽 steph xxx 🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟 #chronicpain #chronicillness #spoonie #ibs #eds #asthma  #fibromyalgia  #disabled #hypermobility #london #ehlersdanlossyndrome #chronicfatigue #pots insta topsy.oneI just went to my primary care doctor with my handbike and enjoyed some fresh air despite a really difficult night with a lot of pain and a lot of crying😢😷 I had to get my very fun monthly vitamine B12 injection💉💉💉💊. This is an intramusculair injection that they place in my butt😂😂😂 it’s quite painfull because it’s a lot of fluid and the fluid is also very thick. I get these injections because my body doesn’t take in any vitamine B12 and without these injections I get a wide range of symptoms varying from hairloss and sleeping a lot to debilitating neurological symptoms. A shortage of vitamine B12 is found in a lot of EDS patients, so if you haven’t been tested make sure you get tested very soon!💉#ehlersdanlossyndrome #eds #ehlersdanlos #edswarrior #clusterheadache #chronicpain #chronicillness #b12shots #spoonie #spoonielife insta topsy.oneLast night... while in the car I had another clusterheadache attack😭 so I had to inject myself with this beauty😂. I love that these injections work so well against clusterheadaches, but I hate the injection part! It’s an intramusculair injection that you can do in you upper leg or upper arm and it hurts like hell😭💉😷 after that we turned around and went straight home and my mum had to help me with taking my meds, brushing my teeth and undressing me and than changing into my PJ’s😷 I’m so gratefull to have a mum who will help me when I can’t take care of myself😍❤️ Thank you mum, for taking care of me😘🌺#ehlersdanlossyndrome #ehlersdanlos #eds #edswarrior #clusterheadache #sumatriptan #injection #chronicpain #chronicillness #spoonie #spoonielife insta topsy.oneKun pitäisi tehdä kaikkea, mutta et jaksa etkä pysty koska #eds #ehlersdanlossyndrome #chronicpain #exhausted #oneofthosedays insta topsy.oneMood of the day...
#spoonie #ehlersdanlossyndrome #pets #doglover #catlover #chronicillness insta topsy.one

Best tweets:

Charli6 24/11/2017 12:59
At the end of a 6 day flare-up, it’s been a long week of shooting pains, spasming muscles and relentless aching triggered by....nothing! Thank goodness for the supportive people I’m surrounded by so I can still get on with my life. I’m very lucky #EhlersDanlosSyndrome
Destiny Sedlacek, 19, from Weybridge, was diagnosed with a genetic disorder known as Ehlers Danlos Syndrome in 2016. The syndrome affects the connective tissues that support skin, bones, blood vessels, and many other organs. Since the diagnosis Destiny’s ...
amanda mc keever 24/11/2017 04:17
Can't sleep because of pain everywhere. #EhlersDanlosSyndrome

The Pain Pendulum Thu, 16 Nov 2017 19:35:00 GMT
Maria Pollock suffers from a connective tissue disorder called Ehlers-Danlos Syndrome. She said she's been diagnosed with a genetic polymorphism, a condition that makes her resistant to many pain medications. Pollock said the opioid drug that worked for ...
Rochester Moms Blog 23/11/2017 11:50
Tears poured down my face when I read the symptoms. They fit me to a "t." #ehlersdanlossyndrome #EDS #chronicpain rochestermn.citymomsblog.com/fitness/yoga-r uined-life-raising-awareness-eds/   …
http://pic.twitter.com/iqsVCCBEE9
Tears poured down my face when I read the symptoms. They fit me to a "t." #ehlersdanlossyndrome #EDS #chronicpain  http:// rochestermn.citymomsblog.com/fitness/yoga-r uined-life-raising-awareness-eds/   … <br>http://pic.twitter.com/iqsVCCBEE9
Tonight, we're joined by three young Australians who've had to face their own mortality. Twenty-four-year-old Robin Eames has Ehlers-Danlos syndrome, a genetic connective tissue disorder that has no known cure. Robin used to support voluntary assisted ...
Zöe Jay Modelling 23/11/2017 11:22
Watching #miraclecure about #MultipleSclerosis - only there was some "miraclecure" for #ehlersdanlossyndrome so many similarities
Tennant says the "red flags" perceived by the DEA are consistent with a practice like his, which specializes in treating severe, intractable pain caused by conditions such as arachnoiditis, Ehlers-Danlos syndrome, reflex sympathetic dystrophy, and post ...
Agony Autie 23/11/2017 05:56
Pain in my hand & down my arm after dressing myself for bed (Liam usually helps me) and I look down to see this. Time. To. Rest... #ehlersdanlos #ehlersdanlosgrrrls #ehlersdanlossyndrome #eds #autistic #agonyautie #ActuallyAutistic #chronicillness #potssyndrome #TimeToRest
http://pic.twitter.com/hVT9zVAtti
Pain in my hand & down my arm after dressing myself for bed (Liam usually helps me) and I look down to see this.  Time. To. Rest...  #ehlersdanlos #ehlersdanlosgrrrls #ehlersdanlossyndrome #eds #autistic #agonyautie #ActuallyAutistic #chronicillness #potssyndrome #TimeToRest<br>http://pic.twitter.com/hVT9zVAtti
I wanted to take part in Nanowrimo but I'm chronically ill with chronic fatigue syndrome and Ehlers Danlos syndrome and 50,000 words in 30 days is just too much for me. Here's my issue. I majored linguistics and minored in languages at college and never ...
*facepalming intensifies* 23/11/2017 01:56
EDS is a condition full of paradoxes. I've not "warmed up" or stretched out properly in weeks yet this was comfier than sitting upright. #BendyLogic #EhlersDanlosSyndrome
EDS UK 22/11/2017 08:24
The latest videos from the Management & Well-being conference are now available to view online! https://www. ehlers-danlos.org/news/2017-mana gement-and-wellbeing-conference-videos/   … #EhlersDanlosSyndrome
Kirstin Gemmell 22/11/2017 07:50
First appointment with Rhematology today for #EhlersDanlosSyndrome slightly scared not sure what to expect
Spoonie Zebra 22/11/2017 05:31
Ann Christine 21/11/2017 03:11
When you flush the toilet and cause a finger dislocation. #EDS #ehlersdanlossyndrome #EDSproblems
http://pic.twitter.com/tau0ep7PEM
When you flush the toilet and cause a finger dislocation. #EDS #ehlersdanlossyndrome #EDSproblems<br>http://pic.twitter.com/tau0ep7PEM
lex 20/11/2017 04:19
Living in this body is like a personalized cage in hell #EhlersDanlosSyndrome #EDS #zebradown
http://pic.twitter.com/PjypLl3rOR
Louise   💛 19/11/2017 04:30
Sunday lunchin’ #ChronicPain #chronicillness #biomedicine #biochemistry #EhlersDanlosSyndrome
http://pic.twitter.com/7bMFw31eu7
Sunday lunchin’ #ChronicPain #chronicillness #biomedicine #biochemistry #EhlersDanlosSyndrome <br>http://pic.twitter.com/7bMFw31eu7
It's like they know. #EhlersDanlosSyndrome
http://pic.twitter.com/ELCnDHR68G
It's like they know. #EhlersDanlosSyndrome <br>http://pic.twitter.com/ELCnDHR68G
Chelsea Addy 19/11/2017 08:18
This body is so exhausting #EhlersDanlosSyndrome #EDS
http://pic.twitter.com/54BoIy9qa2
Lisa Klimas 19/11/2017 05:39
Some days the idea of living this way forever is unbearable #chronicillness #RareDisease #mastcelldisease #ChronicPain #POTS #EhlersDanlosSyndrome wp.me/S5eAyr-ruthless  
I’ve decided that I will donate some of my proceeds from Chronic Hope Jewelry to either #EhlersDanlosSociety or #NAMI, or both. Finally making some decisions! #EhlersDanlosSyndrome #EhlersDanlos #EDS #mentalillness #mentalhealth #mentalhealthawareness #endthestigma
Steel Zebras   ♿ 15/11/2017 07:43
Calling all zebras, @sainsburys have made doughnuts just for us. People with #EhlersDanlosSyndrome are medical zebras, therefore they are all ours. In fact anyone with a rare medical condition are zebras to!! https://www. ehlers-danlos.org/about-us/chari ty-aims-and-focus/why-the-zebra/   …
http://pic.twitter.com/egj1IJUDrN
Calling all zebras, @sainsburys  have made doughnuts just for us. People with #EhlersDanlosSyndrome are medical zebras, therefore they are all ours. In fact anyone with a rare medical condition are zebras to!!   https://www. ehlers-danlos.org/about-us/chari ty-aims-and-focus/why-the-zebra/   … <br>http://pic.twitter.com/egj1IJUDrN
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