Liste des hashtags les plus populaires par sujet #RAREDISEASE

Meet “bear” (as Isla calls her), our little tubie friend from @tubiefriends. It’s the best teddy Isla has ever received, it comes to all of Islas hospital stays, to her therapy sessions and even to nursery when she tries to explain to others what her tube is for but she doesn’t always want to show hers. It’s also massively help Isla understand her tube and feel a bit more normal, or unique depending on how you view it. @tubiefriends is an amazing charity that send children with a variety of different needs a teddy that is exactly the same as them; some have NG’s, others have trachys etc. They survive purely on donations and volunteers. But they brighten up so many children’s lives. She even smells of strawberries ❤️ . #tubiefriends #tubie #tubielife #feedingtube #tubefeeding #gtube #gastrostomy #peg #minibutton #mickeybutton #unique #teddy #tubieteddy #complexneeds #additionalneedsparenting #specialneedsparenting #medicallycomplex #parentingblogger #mumbloggeruk #blogger #mummyblogger #motherhood #neurodiverse #raredisease

Not a bad way to spend a Monday

YOUR EXCUSE WAS WHAT AGAIN? #blaah #snowflakes Girlfriend support @angel_chine Long overdue treatment thanks @cobus_strydom #myastheniagravis #strong #raredisease #rarebreed #girlfriend #showlove #Godisgood #pharmacist #exampreparation #peace #bruh #supermodel #girlfriend

Photo by @janellesilver . "Thank YOU! Don’t underestimate the power of kindness, the smile you give a stranger, the supportive text you send, the hug you share, the space you hold.. nothing is ever for nothing and the ripple effect is real. Kindness can change and save lives, that’s how powerful it is, it makes the world a better, brighter place. Show yourself kindness and you will always have a cup overflowing with it to share with others. Feel free to tag the kind people you’re grateful for and take care of yourself today, sending sooo much love your way!"

⁣ Today, for the first time since I got sick, I went for a walk in the woods. This should have been a monumental milestone, and an exciting accomplishment. Instead it brought me to tears that feel like they’ll never stop. ⁣ ⁣ There was a time when I thought my days of hiking might be over. Those times are some of the darkest of my life; literally crawling to and from the bathroom to throw up because if I stood up I blacked out. In those days, I clung desperately to the idea that one day I would be able to do this again. And today, I did it. That’s amazing, right? ⁣ ⁣ But I have to be really honest here: I didn’t magically feel better today. I didn’t stop being sick, I just have my symptoms managed enough that I can do the things I want, sick. ⁣ ⁣ My abdomen still hurt, my GI tract was upset, my dressing itched, my mast cell acted up from seasonal allergies..... then it started drizzling and I had to leave because I can’t get my port wet. The girl who used to climb the face of a waterfall in the mud and torrential rain, had to leave because of a light drizzle. ⁣ ⁣ My chronic illness is literally ALWAYS on my mind, directing every action I take, every choice I make. I’m always calculating the benefit of something versus the stress it’ll put on my body. Before everything I do, I ask myself; “is it worth the crash?” ⁣ ⁣ My illness doesn’t go away when I’m doing something exciting, it follows me like a solemn reminder of what my life is really like now. It’s a part of me and whether I like it or not and no matter how desperately I want it to, it’s not going anywhere. ⁣ ⁣ So today, I am grateful that I’ve made so much progress that I got to get out in nature for a little while. But today, I’m also really f*king sad. I’m mourning the life I had, the ability to hike anywhere without any concern about my health. I’m mourning the risk-taking, adventurous, spontaneous person I once was. I miss her.

Headed to the capitol this week for an important & potentially life changing meeting. I’ll share details when I am able, but I’m starting to get butterflies so wanted to share what I could! If it doesn’t go well then I guess I’ll have to delete my account and go into hiding b/c I’ll be mortified. Haha JK! But I am really stepping so far out of my comfort zone in a lot of ways for this one, friends. . . I told an old friend about this opportunity (I was clearly excited) and she said, “oh no, DC is so dangerous”. —> #dontbethatperson . This comment has been hitting me hard and is my motivation for putting this post together. First, I’m from ATL so if you’d like to chat to dangerous then let’s do it. But foremost, this type of thinking/communicating is what is truly dangerous. I’m very aware that cities can be dangerous, but I’m also glaringly aware that these preconceived ideas are huge roadblocks to progress and acceptance. I’m not going to visit DC and inherently assume danger lurks at every turn. Instead, I’ll be aware, but also open to opportunities to lift others up and to see the city for everything it has to offer. ☀️ I visited Chicago earlier this year and got a similar warning from a well meaning friend. Why do people automatically want to say that a place is dangerous before thinking of what it has to offer instead? It’s a knee jerk reaction to the unknown and that’s the very thing I’m fighting against. This is the very way so many people look at and think of disabilities/different needs. The unknown isn’t as scary as it seems, you just have to be brave enough to give it a chance! ♥️ #bebrave #rarediseaseadvocate #visitdc #careaboutrare #rarediseasewarrior #raredisease #rarewarrior #rareis #pyridoxinedependentepilepsy #inbornerrorofmetabolism #epilepsymom #epilepsyadvocate #epilepsywarrior #lobbylikeamother #advocatelikeamother #jackjacklove #newbornscreeningsaveslives #globaldevelopmentaldelay #differentnotless #differentneeds #disabilityrights #disabilityadvocate #littlestwarrior #globalgenes #everylifefoundation #raremom #epilepsydoesnthavejack

Back with my bear ❤️

For some reason, this outfit reminds me of Esmeralda from The Hunchback of Notre Dame.⠀ ⠀ In my younger years, Esmeralda, this independent, strong gypsy was my favorite Disney “princess”. ⠀ ⠀ ⠀ I rarely took off my Esmeralda dress; I was her for Halloween for like three years in a row. (Once I realized she wouldn’t be pictured on any Disney princess paraphernalia, I switched to Belle.) ⠀ ⠀  I admired her inner beauty.  She was a kind, compassionate, selfless soul who gravitated to Quasimodo, despite popular opinions on his disability, and even at that age, (before I had any clue about living with a disability), I connected. ⠀ ⠀ Who was your favorite @disney princess (or character) and why?⠀ ⠀ ⠀ { side note }: I gave up trying to get the wrinkles out of my skirt ‍♀️ #chronicillnesslife⠀ ⠀

Balancing work, school, and a new puppy has me running around constantly which we all know doesn’t make POTS happy. To make sure I’m avoiding dehydration I’ve been chugging @drinkdripdrop like there’s no tomorrow. DripDrop has been an easy (and tasty) way to get in my salt + electrolytes for the day! #dehydrationrelief