List of the most popular hashtags for theme #RAREDISEASEDAY2019

Thanks to Miss Eléonore Bessong for inviting me at the “Follow me” program. #rarediseases #rarediseaseday #rarediseasesurvivor #rarediseasemonth #rarediseaseday2019 #rarediseaseawareness #rarediseaseday #rarediseaseweek #rarediseaseadvocate #rarediseasecommunity #rarediseaseresearch #rarediseasekids #indonesiacareforrarediseases #rarediseasefighter #rarediseasephotochallenge #rarediseaserockstar #rarediseaseawarenessmonth #rarediseasecycling #nationalrarediseaseday #raredisease #rarediseasessuck #rarediseasewarrior #rarediseasefoundation #rarediseaseuk #rarediseasessa #rarediseasessouthafrica #rarediseasefacts #rarediseasecameroon #rarediseaseafrica #rarediseasemom

I’m a I was going to start this post out by saying “happy rare disease day” but it is in fact not happy at all. #rarediseaseday2019 is to spread awareness of the diseases that affect less than 200,000 people in the us. In my case, there are less than 20,000. • Towards the end of 2017, I was diagnosed with a form of Mitochondrial disease. It’s a complex one mutation in my 11778 gene which is known as leburs optic neuropathy plus syndrome. The hard part about leburs plus is that it is extremely rare. Usually with leburs the patients optic nerves are messed up, but in my case (the +) my autonomic nervous system goes haywire. My mutation is 75%, which means that 75% of my Mitochondrial cells, the cells that make the body’s energy, don’t work. Think about it... a normal person has 4x the amount of energy I do. Due to the lack of energy, my body simply can’t do the normal things it should, from maintaining heart rate/BP to some odd things in my stomach, and my body temp is always heightened. Anyways, in the summer of 2015, something set off my symptoms. I was diagnosed with CRPS around the same time due to chronic debilitating back pain as well as severe flare ups on the right side of my body (swipe to see flare pics). • As it is with all invisible illnesses, I will get messages from people telling me to “ignore the pain” or that “I’m faking it.” They used to bother me, but I ignore them now. I had a woman say that I was “faking” and that “these diseases were deadly”, but I find it odd because my disease is a genetic mutation, thats proven with genetic testing. I also know they are deadly, I had a dear cousin pass away from mito. The thing about mito is that it’s so new to the medical world that many docs have no clue how to treat it. It also effects every individual differently, which makes a cure even harder to find. I pray that one day there will be. I struggle every single day, I am in pain all the time. I’m not even joking. There is not one time in the past couple of years that I don’t remember being in some sort of pain. FIGHTING FOR A CURE! #mitostrong #spoonielife #invisibleillness #showyourrare #mitochondrialdisease #mitowarrior

Help us celebrate Hadley by wearing your blue jeans tomorrow. Let’s show support for everyone effected by rare genes and don’t forget to tag her!! . A little about Rare Disease day!! . A disease or disorder is defined as RARE in the United States when it affects fewer than 200,000 Americans at any given time. It is estimated that approximately 25,000 to 50,000 people in the US have osteogenesis imperfecta (OI). . World Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families. . Rare Diseases are hard to deal with and many people may not understand these conditions. Please help us spread awareness, because awareness makes a difference. . #showyourrare #ilovesomeonerare #SHAREforAWARENESS #hadleysoiadventure #RareDiseaseDay2019 #OIAwareness #UnbreakableSpirit #raregenes #rarediseaseday #oican #unbreakablespirit #shareforawareness #rarediseaseday #oiawareness #osteogenesisimperfecta

#tb to knee braces and cute doctor's offices because today is International #RareDiseaseDay ! There's a link in my bio to learn more about the day. A few years ago I was diagnosed with Ehlers Danlos Syndrome Type 3 (or EDS), which is a rare genetic connective tissue disease. Essentially, my body can't effectively produce collagen, meaning all the connective tissue and ligaments in my body is a bit weaker than it should be. After years of physical therapy appointments, scans, blood tests, braces, holistic treatments, and being on a waiting list for specialists you may not even have heard of, I've finally reached a place where my health is more or less stable. It has been a long and arduous road, but I am lucky to have a great support system. EDS has no cure or even treatment, which means that spreading awareness is super important to increase research funding! To find out more about the condition, check out this website ------------------> https://www.ehlers-danlos.org <--------------- #rarediseaseday2019 #ehlersdanlossyndrome #eds #chronicillness #hypermobility

Today I’m raising awareness about my disease for 2019’s Rare Disease Awareness Day. RRP (Recurrent Respiratory Papillomatosis) is a deadly illness that affects less than 5% of the population, and the lucky few who are diagnosed are plagued with a lifetime of surgeries and medical hardships because RRP has no cure. To date, I’ve had approximately 73 surgeries to clear papilloma and scar tissue from my vocal cords so that I can breathe, and I have a quiet, raspy voice to prove it. Without surgeries, airway blockage can be fatal and leads to severe difficulty breathing and speaking. I am one of the few RRP warriors to have experienced remission from the disease (10+ years of no active papilloma!!!!), but I still have extreme scarring on my vocal cords and require surgeries every few months to maintain a stable airway. There’s no telling how long I will be able to go between surgeries, so I do my best to make every day count while breathing normally. I’ve never known a life without RRP, but I do know that by raising awareness, a cure is sure to be in my future.

2.28.2019 Rare Disease Day 2019 Two years. Two years of finally attempting to embrace & accept every aspect of myself fully. I still feel like I need to tell people about my hand the first time I meet them. Otherwise I risk facing their silent judgement & [not so secret] staring. However, I know I don’t owe anyone an explanation. It is a constant inner battle. Making new friends, taking a stranger’s photo, going on dates, writing, painting: just doing anything with my hands. I don’t know if the inner battle will ever end. & even though I give my self every reason to think I don’t fit in... I am incredibly thankful for the people who make me feel like I belong. //c.d.\\ • Did you know? Rare diseases are not so rare: There are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children. People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES. This year’s theme is: Bridging Health & Social Care. • •••Show Your Rare. Show You Care.••• • #ShowYourRare #MyRare #AloneWeAreRareTogetherWeAreStrong #RareDiseaseDay2019 #RareDiseaseDay #OlliersDisease #OlliersDiseaseAwareness #MultipleEnchondromatosis #NORD

This year marks 6 years since finding out that glasses were not going to help with what I was experiencing. I was diagnosed with a rare degenerative eye condition. And so the story began..! #RareDiseaseDay #RareDiseaseDay2019 #rarediseaseday2019 #rarediseaseday #visuallyimpaired #stargardts #sightloss #sightlossawareness #london #lucyandyak #rare #iamrare

I someone rare!!!! #rarediseaseday2019 #1q43q44 #hattieblake

We’re moving!!! #rarediseaseday2019 #showyourrare #showyourstripes #21qpartialdeletion