#shareyourrare

[aslsuzyq]

#rarediseaseday #shareyourrare #rarediseases #awareness #rsd #crps #gastroparesis#eds4 #eds #ra #chiari https://www.instagram.com/p/BubtzC_n0qz/?utm_source=ig_tumblr_share&igshid=1l1ez498u2nzt

[mmhope]

Hoy 28 de febrero se celebra el Día de las Enfermedades Raras, pero para muchos como yo, es todos los días. Existe una larga lista de enfermedades que son bien conocidas y que tienen opciones de tratamiento tradicionales o alternativos, curas o protocolos a seguir para ayudar al paciente a sentirse mejor. Sin embargo, también hay una lista de #EnfermedadesRaras y desconocidas que pueden tener opciones de tratamiento disponibles, pero no todo el mundo las conoce en sí mismas ni tampoco cómo pueden tratarse. De alguna forma, todos estamos afectados por las Enfermedades Raras, por eso nuestra campaña busca informar al público en general y sensibilizar a políticos, representantes de la industria, investigadores, profesionales de la salud para que las enfermedades raras sean cada día menos desconocidas y “menos raras”. . En mi caso, la esclerodermia es una enfermedad que consiste en la acumulación de tejido similar al cicatricial en la piel y en otras partes del cuerpo. También daña las células que recubren las paredes de las arterias pequeñas. El sistema inmunitario ataca por error y destruye el tejido saludable del cuerpo. Se desconoce su causa. La acumulación de colágeno en la piel y otros órganos lleva a que se presenten sus síntomas. Afecta a personas de 30 a 50 años de edad y aparece en las mujeres más a menudo que en los hombres. . Todo cambia. Tu forma de pensar y de asumir la vida, tus prioridades, tus sueños, tus ilusiones, tu cuerpo, tu piel, tu cara, tus manos, todo cambia. Yo acepté conocerla para aprender a manejarla lo mejor posible con todas las herramientas tradicionales y alternativas disponibles. Aunque no somos mejores amigas, hemos aprendido a convivir juntas. Mi milagro es seguir viva ❤️ . #HOPE #HopeForACure #RespirarEsVivir #Scleroderma #PulmonaryHypertension #SystemicSclerosis #RareDisease #ChronicIllness #RareDiseaseDay #ShareYourRare #CareAboutRare #IAmRare 📷@pedrowazzan https://www.instagram.com/p/BfvpWLxjbJl/?utm_source=ig_tumblr_share&igshid=19w6uqweq3fhx

[kimeupton]

Thank you to those of you who have shared your rare disease journey. Not only is this done to find support, and not feel overwhelmed, but also to inspire. I hear you, see you, and am sending hugs. . Some are not ready to share their stories, due to public ridicule (“but you don’t look sick”), non-helpful “remedies” (“my brother’s girlfriend’s sister’s mom said to run a lemon peel on your forehead daily”), or processing the trauma that comes from spending years and years trying to find a diagnosis...I see and hear you. If you need a listening ear, just let me know. 💖 . . . #rarediseaseday #shareyourrare https://www.instagram.com/p/CL1XzhTAYPj/?igshid=nvp3m72a2u7j

[emmahastwomoms]

Rare Disease Day is this Sunday, February 28th!! Emma is one of less than 175 people with her genetic mutation and because of that there are so many unknowns and questions for her future. Spreading the word about her rare disease and all other rare diseases is so important for the future!! She will always by My Why. ⁣ ⁣ @nr2f1foundation @rarediseasedayofficial ⁣ ⁣ #emmaleimomi #mywhy #whyicareaboutrare #rarediseaseday #shareyourrare #careaboutrare #nr2f1 #nr2f1foundation #bbsoas #boschboonstraschaafopticatrophysyndrome #ona #opticnerveatrophy #onh #opticnervehypoplasia #cvi #corticalvisualimpairment #strabismus #hypotonia #developmentaldelay #spd #sensoryprocessingdisorder #asd #autism #oromotordysfunction #whitecane #visuallyimpaired #gtube #specialneeds https://www.instagram.com/p/CLsh-y0sY_b/?igshid=1fx07wqbcjgtl

[spazkitty-otaku]

It's rare disease day! Let's raise awareness for the millions of zebras out there! What's up, fellow porphs? #acuteintermittentporphyria #porphyria #rarediseaseday2018 #shareyourrare

[authoramandaleigh]

Today is Rare Disease Day!!  In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Since these diseases are so rare there is little to no government funding for them. How can you help, then? You can go to NORD’s website to educate yourself about rare diseases and find ways to take action.  I have a very rare disease called Nephropathic Cystinosis. One thing you can do tonight to help is to purchase this book. Strength: Lives Touched by Cystinosis. It’s a collection of personal essays from those of us with Cystinosis as well as friends, family and caregivers. In addition to spreading awareness, all of the proceeds go to the @cystinosisresearchnetwork!! You can find the link to their website, as well as NORD’s in my bio. #showyourrare #careaboutrare #shareyourrare #cystinosis #rarediseaseday2019  https://www.instagram.com/p/Bucyy94Ax3H/?utm_source=ig_tumblr_share&igshid=1v9ebiamenlcf

[empoweringpts9]

It's #RareDiseaseDay, so we spread awareness for #RareDiseases! •One of my rare #diseases is #PSC. I was diagnosed in #2002, and I recall the phonecall from the liver #GI. "You're a newly diagnosed liver disease patient." Um what?!? This call occurred after the results from an #ERCP and #biopsy. •PSC is thought to be an #autoimmune #liver disease, with no known #cure. It’s the inflammation and narrowing of the bile ducts, which can result in hardening. There is a possible connection between IBD and PSC. We keep an eye on any visible changes, seen on testings, to my liver and #bileducts. We’ve been watching a sclerosing (hardening) area for years, and luckily it’s staying roughly the same size, for now. . . . . #primarysclerosingcholangitis #rarediseaseday #rarediseaseday2018 #PSCUK #globalgenes #Urso #IBD #ShareYourRare #inflammatoryboweldisease #crohns #ulcerativecolitis #colitis #PSCAwareness #WeNeedACure #autoimmunediseases

[positivity-in-pain]

FACT: There are more than 7,000 known rare diseases to date. #ShareYourRare #RareDiseaseDay2019

[storywrtr]

#Repost @robertdowneyjr with @get_repost ・・・ Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #TeamDowney ... It has been created to help raise awareness so please share this today for the children as this is their #RareReality ... Please #ShareYourRare and #ShowYouCare #RareDiseaseDay #2019 #GoMadForROHHAD #MissionFindACure #RohhadAwareness https://ift.tt/2NxqlDR

[iamokaynowdeb]

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A post shared by Deb(Iamokaynow) (@deb_iamokaynow)

#2By2 in 2018 #heretothere #Advocacy #GPReporting #CureGP #Gastroparesis #Motility #DigestiveDisease #Diabetes #Mito #AutoImmuneDiseases #All #ChronicWarriors of all #diagnosis ready to create a change #betterTreatments #BetterQualityOfCare #BetterResearch #Cures we want to #eat #Be #nourished by our food #absorb their #nutrients expel their #wastes from our bodies! Yes we want #Cures from #dehydration #malnutrition to change #invisible2visible #Incurable2Curable we can do it #TakeABite4GP #ShareYourRare #TagUs #MotilityBill #HR1187 #FGIMD #IBS requires cosponsors in the #USA @tippedmug #TagUs We are #StrongerTogether #TogetherWeFightTogetherWeWin @aprilgqg we can be a #BeaconOfHope @gimotility #DontQuitBeforeYourMiracle @carolynmcbane We are #Green4GP @bundytr5 #ItIsntEasyBeingGreen @jessicafaye.watters #GastroparesisFightin4AChange @melissaadamsvanhouten #GPPieFaceChallenge @jingle_bells_25 #ButYouDontLookSick @christinemiserandino #HealingGastroparesis_Naturally @essential_7 we have so many brilliant #chronicwarriors who all are courageous, creative, compassionate, caring, supportive, loving, each and every one spark the creativity of the other with their positivity🥄🥄🥄✨✨ each and every act of advocacy lifts us all... no matter the incurable community it comes from —a Campaign of lifting us towards better cures, breakthroughs, research, quality of care, treatments and more...these are all blessings to our humanity! So let us create sparks aka glitter ✨ let’s shine because when one shines we all shine! When one community or nonprofit benefits, we all benefit! When another is blessed by a gift always #HappyDance for them you are in truth 💃🏽🕺🏽👯‍♀️#Dancing for yourself - for us all! #DanceWithUs (at Star of Bethlehem Church)

[medbeginner]

Cada 29 de Febrero celebramos el Día de las Enfermedades Raras, pero como este no es año bisiesto, se recuerda el día de hoy. @acemunison organizó por 2da ocasión el Concurso de Carteles Científicos para difundir entre la comunidad estudiantil estás enfermedades que pueden pasar desapercibidas pero que son igual de importantes que las frecuentes. Es toda una dicha participar en este tipo de actividades tan inclusivas💕 #ShareYourRare #RareDiseaseDay #SeckelSyndrome Foto por: @marioripalda (en Facultad De Medicina Universidad De Sonora)

[aslsuzyq]

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A post shared by ASLSuzyQ (Suzy) (@aslsuzyq)

#rarediseaseday #shareyourrare #rarediseases #awareness #rsd #crps #gastroparesis#eds4 #eds #ra #chiari #wearerareciaag https://www.instagram.com/p/BubzExon87A/?utm_source=ig_tumblr_share&igshid=16c2h5pn7lqiy

[harleygrant]

Pulls from my @deckmaniacs box this month. Spell Queller! ♡ #shareyourrare #mtg #magicthegathering #mtgaddicts #crackapack

[emmahastwomoms]

It’s #FeedingTubeAwarenessWeek so here are some reasons Emma got her g-tube. At 2 years old, after a year of feeding and speech therapy her feeding was still not progressing and she was falling into the “failure to thrive” category with her weight. We found that she has an abnormal swallow pattern and her severe sensory processing disorder causes her to not want anything beyond liquid in her mouth. The g-tube has allowed us to give her the nutrients she needs and keep her weight steady ❤️⁣ ⁣ #emmaleimomi #gtube #gtubebaby #gtubeawareness #feedingdisorder #dysphagia #oromotordysfunction #hypotonia #nr2f1 #bbsoas #cvi #ona #onh #sensoryprocessingdisorder #autism #autismspectrumdisorder #raredisease #geneticmutation #shareyourrare #countdowntorarediseaseday #careaboutrare https://www.instagram.com/p/CLDD1F4sAE2/?igshid=1rnua2557g8ua

[aslsuzyq]

#rarediseaseday #shareyourrare #rarediseases #awareness #rsd #crps #gastroparesis#eds4 #eds #ra #chiari https://www.instagram.com/p/BubvTCqH-nn/?utm_source=ig_tumblr_share&igshid=1aje78aqdm2gy

[aslsuzyq]

#rarediseaseday #shareyourrare #rarediseases #awareness #rsd #crps #gastroparesis#eds4 #eds #ra #chiari https://www.instagram.com/p/BubtLeWH4qE/?utm_source=ig_tumblr_share&igshid=rei14mir9aco