Rarediseaseawareness Photos & Videos on Instagram

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laurensjourneyavm

I watched my daughter sit calmly today while a nurse inserted an IV after Lauren told her, very matter of factly, where she would prefer to have it placed. I reflected on this tonight while sitting across from her and enjoying ice cream together. This kid is tough as nails, and she is sweet, kind, empathetic....and still a child. One who never should have had to learn to be tough. A rare disease diagnosis sure has a way of changing everything. One moment you're just going along blissfully and the next you're in a hospital room and a doctor seems to be speaking a different language to you. Gradually you learn that language. You begin to understand. And then you get angry, and you rage against the world, you have complete breakdowns....grief and a sense of loss as you see your child's life change is profound. Eventually it gets a little easier. You turn into a researcher, an advocate. You become that parent that helps other parents that are just beginning this (totally f'd up) journey. You cope, you start embracing every day because you truly understand that tomorrow isn't guaranteed. You're able to smile and have hope. And then you find yourself sitting across from your beautiful daughter, looking at my favorite set of brown eyes, watching her eat her ice cream. It's those moments that sneak up on you and the pain and fear rush in. I sat there, fighting the tears that were threatening to fall. I succeeded. I saved them for a dark room while my sweet girl sleeps to the sound of rain coming from her phone. Every so often you have to give in to the pain or else it'll eat you up, it'll turn you into someone you don't want to be. Just don't give in while you're having ice cream.

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frejafolkvangar

Rainbow zebras from @toms to mark my EDS diagnosis. Doctors are taught when they hear hoofbeats to think horses, not zebras. But some of us really are zebras. And some of our family medical histories are zebras all the way down. #zebrastrong #EDSstrong #spooniestrong #zebra #medicalzebra #zebrapride #whenyouhearhoofbeats #ehlersdanlossyndrome #EDS #diagnosis #mytoms #tomsshoes #toms #dysautonomiaawarenessmonth #rarediseaseawareness #raredisease #ehlersdanlos #zebrasallthewaydown #thinkzebra #thinkrare

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natalie807

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joandher2followers

Another hospital vacation coming up and all packed. People do adapt to their routines, but sometimes it's just hard. Despite the reality of the present moment, IvIg being effectively a routine, it doesn't quite feel like one. I dislike having to sleep in a hospital bed, meeting someone new every time and having someone saying, "well, it's just for a few days". Today I'm in a low mood, tomorrow is tomorrow. Some days having an incomprehensible chronic illness bothers you just a little more than others, those days when that feeling of hopelessness sticks and you try your best to shake it away. . . . . . . . #coffeestainedbook #sps #diabetes #t1diabetes #stiffperson #life #raredisease #rare #living #struggles #keepgoing #raiseawareness #rarediseaseawareness #beyondtype1 #ivig #diabadass #diabetesawareness #rarediseases #invisibledisability #awareness #diabetescommunity #lisboa #trip #defiance

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blackoutthesun

After some inspiration last night I decided to try and finish my #drawing of #MarilynMonroe, I am 99% there LOL had to improvise on the hair since the photo I chose to draw from is not easy but I wanted to draw her in a pose that not everyone and their brother has already done! The pain was getting to me so have to take a break for a few day's #nutcrackeresophagus #raredisease #rarediseaseawareness #artsharing #normajeane #hollywoodicon #hollywood #art___share #artnerd #art_collective #artgallery #artwork #sketch #artsharing #sketchbook #sketchbooks #pencilart #pencildrawing #drawings #starvingartist #drawingsketch #artcollector #artforsale #artworkforsale

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rare_and_invisible

Scars. . I have 2 physical scars because of myositis, technically 4, but I count 3 of them as one, as I can cover them all with my thumb, they were left there by my first PICC line, you can scroll across for a picture of it, it looks like a birds footprint. . I want to talk about scars you can't see, as for my college project I decided to look at some old diaries. . Looking back I know I have been through a lot, possibly more than the average English teen girl, nearly died twice, severely ill, been in great Ormond Street, plus other stuff not health related including severe bullying and something that warrented a police investigation that the effects of didn't hit me until long after. All these things leave scars, but noone can see them on your skin. These scars can only be seen by you, and anyone you let see them, and they can shape you. . Being ill has left some of these scars, but other things have left many too. They aren't a bad thing, they show I survived, but some days they're hard to live with. Scar tissue is stronger and tougher than normal tissue though, and in the same way my invisible scars make me stronger. . My this is me project has been bringing up a lot of memories and thoughts of the past, I am still unsure what I want to and don't want to include, but I want to be honest. My scars and my experiences have changed me, and I always tried to not let them, but everyone changes, it's just whether they change you for the better or worse that you have to work on. . #myositis #myositisawareness #osteopenia #raynauds #hypermobility #raredisease #rarediseaseawareness #chronicillness #invisibleillness #invisibleillnessawareness #piccline #spoonie #chargie #chronicillnesswarrior #rareandinvisible #beseen #iamnotwhativebeenthrough #iamme #survivor #diaries #scars #invisiblescars #mentalhealth #mentalheathawareness #strong

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biomarinofficial

Ryan is an optimistic and motivated member of the #raredisease community member with MPS I. He graduated from his dream school, @universityoflouisville, in 2017 with a degree in Sports Administration. Way to go, Ryan! . . . #patientstories #mpsVI #BioMarin #healthcare #pharmaceutical #careaboutrare #mpsawareness #mps2018 #rarediseaseawareness

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persistent_systems

What an inspiring weekend at the Mount Sinai Health Hackathon! No matter the actual winner, we ALL win when smart, motivated and creative people like these come together to work on innovative solutions to the challenges facing us! #Hackathon #HealthHackathon #PersistentSystems #rarediseaseawareness #Technology #Software4dot0 @mountsinainyc

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carolinerhodes1

Tonight the ALF honored 3 children with debilitating liver disease. Each of these brave souls had liver transplants this summer. We heard their heart wrenching stories and were in awe of their journey at such a young age. My prayers tonight are for these children and the many others suffering from life altering diseases. I feel blessed to work in an industry that cares so much for Patients and the well-being of their families. God bless all who suffer and give the rest of us courage, compassion and kindness so that we can walk with them(and sometimes carry them)on their tough journey. #rarediseaseawareness #raredisease #americanliverfoundation

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inspired_dietitian

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whits_life88

#rolexchallenge #rarediseaseawareness #littleboyswithbigdreams #tiktok #ayoandteo @shmateo_ @ayo.and.teo__ @ogleloo #beingsicksucks hope you enjoy my nerdy self lol let me know what song to do next lol haha πŸ˜‚ @tiktok @tik_tok_az I hope I make y’all laugh haha @ayoteonation #diesalwatch #rolex @rolex

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rare_and_invisible

Throwback time!! πŸ˜‚ . My boyfriend and I have been sorting through my room today, and I was unfortunate enough to find a dvd of a performance I did around the age of 8.... So this is mini me.... πŸ˜‚ Matt keeps making fun of my acting and dancing.... . I also forgot I had a solo song which just played. πŸ˜‚πŸ˜‚ . The last few days I have been working on my college work and today we've been tidying a lot, so now I'm rather tired. . #myositis #myositisawareness #osteopenia #raynauds #hypermobility #raredisease #rarediseaseawareness #chronicillness #invisibleillness #invisibleillnessawareness #piccline #spoonie #chargie #chronicillnesswarrior #rareandinvisible #beseen #throwback #cringing #minime #tired

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skolaskirunning4rare


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