iamrare ehlersdanlossyndrome mastcellactivationsyndrome medicalmarvel pots addisonsdisease lifeiswhatyoumakeit behcetsdisease gastroparesis systemicvasculitis chronicillness erythromelagia liveyourbestlife transversemyelitis alwayschoosejoy hemolyticanemia medicallycomplex alldogsaretherapydogs alldogsdeservelove myhappyplace raredisease adventuresofa12yroldcollador alwaysfindheartsamidstthepain autoimmunedisease chronicpain fashionblogger purplehair rareism remembertolaugheveryday zoolife countonquincy
♠️I am rare to find , confusing to believe, unpredictable to understand, hard to leave!♠️ FOLLOW @trovingr FOR MORE EPIC MOTIVATION
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#rarediseaseday #iamrare
So as some of you know I have an autoimmune disease called EoE
And that makes me rare. It’s an invisible disease so not many know how much pain I’m in on a daily basis cause I don’t show it, you’ll never tell by looking at me that I’m sick.
And that can be hard.
It affects my life daily from my energy to my eating. Mainly eating, at one point a few years ago I was gonna get a feeding tube. Still might need one in future...
if you wanna learn more head to my storey highlights and click the “health” one
Photo:
1: me being cool
2: rare disease day 2019
3: me after waking up from a routine endoscopy
4: a “episode” I ran away from my friends at lunch to go back to the closest toilet to throw up we’ll try anyways. And nearly called an ambulance. Ended up in er that night
5: food first cause of course.
6: discovering new allergies finding new ones every year!
7: not eoe but I have awful chronic back problems so it just adds that on top.
8: chronic bloating I bloat up so so so much...
9: another one of me in hospital
#rare #ausee #eoe #cool #hospital #spoonie #rarediseaseday2019 #disease #chronicillness #sickboi
#imrare #showberryboutique #invisibleillness #spoonielife #feedingtube #bloat #health #heal #life #me
in april of 1991, I was diagnosed with a rare disease called spinal muscular atrophy. the heaviness of that day still sits in my parents’ chests. memories of a doctor saying the words “she will succumb,” assigning the shortest expiration date to their baby girl’s life, and knowing there was nothing—no resources on SMA, no internet for guidance, and absolutely no hope—that would heal a broken family.
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but my expiration date of 2 years came and went. many more birthdays were celebrated. and love was the glue that held us tightly together as we navigated through the trials and triumphs of this rare disease blindly in the dark.
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almost 28 years have passed since that fateful day in april, and while this journey has been anything but easy, it has been the foundation in which resiliency was built, faith was strengthened, and hope was found.
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today is world rare disease day, a day created to celebrate the individual uniqueness and rarity that has made us who we are today, the medical professionals who have shined the brightest light on our rare diseases, and the friends and family who have supported, cared for, and loved us every step of the way.
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if living with a rare disease is like fighting a lifelong battle, I have the strongest army carrying me through. and I believe that’s the sweetest victory of all. happy rare disease day to all my rare gems.
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#careaboutrare #spinalmuscularatrophy #showyourrare #iamrare #rarediseaseday #chronicillnesswarrior #daretoberare #wrdd2019 #unfold #raredisease #SMA #type1
Effortless summer dressing tip number 68863729394843.
Throw on some baggy linen pants, pick up a bright colored cotton blouse, slip into some flats or shoes and done! Sorted for the summer heat :) Wearing @rareism_in and loving it!
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#rare #iamrare #rareism #banjara #summer #summercolors #summerlookbook #summeroutfits #outfitinspo #whatiwore #asseenonme #wiw #lookbook #ootd #ootdmagazine #ootdinspiration #fashiongram #stylegoals #vogue #voguemagazine #summeressentials #sunmergoals #fashionblogger #banjara #linen #cotton #streetstyle
I am unique, I am rare, I am special, I am me!!! ❤️♥️ @madmiaofficial #madmiaambassador #madmiaofficial #gymnastics #gymnast #gymnastlife #daretobedifferent @totoya5515 #shinebright #beyourself #beyou #doyou #shinebrightlikeadiamond #sparklegirlz #beuniquelyyou #iamspecial #iamrare #believe #achieve #followmystory #followme #followmyjourney
Sydneys fun
Went to the zoo, saw some stunning house ate some good food, went to the @ign_au awards night eat way to many donuts!
And got to see my wonderful friends
@justyeliz @crystalcatastrophecreations @tinny_tutu @brookiebee96 @skybrowncosplay
Wearing @showberryboutique necklace
Also I am obsessed with @hujiofficial camera app!
I nominate: @thekapman, @thejordancornette, @carmendefalco5, @barstoolbigcat, @spain2323, @jscheyer, @colinegglesfield, @jonrgreenberg, @mary_s_boyle, @stevecochranshow, @merkinrandy, #JesseRogers, #PatBoyle, #Jurko and YOU! Let’s #smashSMARD & SAVE LIVES together! DONATE TODAY:
www.smashSMARD.org/donate Gene Therapy IS the solution, but it’s VERY expensive. $3 million expensive! EVERY PENNY COUNTS & Will fund SMARD1 #GeneTherapy research at Nationwide Children’s Hopsital To learn more, please like Smash SMARD or visit www.smashSMARD.org ⭐ Please participate, donate, and NOMINATE AS MANY PEOPLE AS POSSIBLE!
Collecter les statistiques #IAMRARE effectuez une recherche à l'obtention des statistiques (Aller à la sélection).