Rarediseaseawareness Photos & Videos on Instagram

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makelemonadewithlupus

~*~* HoMe Is WhErE tHe DoGs ArE *~*~ (Or, as Mike likes to say, the “gorgeous babies” 😂) P.S. When @good_girl_genevieve stretches her legs out, she’s as tall as me! Which isn’t that tall tbh but still that’s a long pooch!

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camomeg90

This #rarediseasewarrior isn’t backing down just yet!! 7 days out of surgery I’m in pain but I’m managing! When I feel like letting it win me over I remember Kyle and the kids and that’s where my motivation to keep going strong comes from. #rarediseaseday #rarediseases #rarediseaseawareness

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savealifewithzebrastripes

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lemongrovemarket

Do you know that Adeline’s Market is a kid friendly event? Bring your family, enjoy the food & music, and celebrate family, support, & community with us 💜

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pomcisland

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tripawd.princess

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collierstronger

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brittany.marie8

Portland event complete ✅ It’s been a great few weeks, but I’m really looking forward to being home tonight ❤️

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collierstronger

SATURDAY STYLE // Collier’s feeling much better so we’re headed to hippotherapy and literally jumping right back on the horse. A bad cold might knock him down, but never count our dashing little fighter out! 💪🏾 . 📷: @mellematic . . . #littlelohead #lifewithCDash #CollierStronger #hypotonia #hypotoniaawareness #specialneeds #specialneedskid #specialneedsmom #specialneedsparenting #momlife #queenskid #nyckid #queensmom #nycmom #TeamCollier #KIF1A #KIF1Akid #raredisease #rarediseaseawareness #momswithcameras #momsofIG #kidsofIG #theraplay #toddlersofinstagram #toddlerswag #toddlersofig #blackboyjoy

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lifeofnessleigh

💯% Truth! ☝🏼 My #LifewithPI is very rare & complex. The hardest part of living with a Primary Immunodeficiency is when people aren’t willing to understand what it is, how it works, why I have it, etc. & when they aren’t caring whether they understand it or not. Especially family & friends. The people in my life that don’t understand my #CVID are the ones that constantly bring down my health even more, make me feel worse than what I’m already dealing with, constantly tell me how I’m not doing enough (even when I know I’m doing even more than that), and no matter how much I explain things to them, they never truly listen & believe they can “fix” me. I do my best to avoid these people’s opinions but it’s not right that I’m already dealing with so much of something, fighting for my life & I have to take extra time I’m around these people to pause, explain & then have it be for no reason, just to have it happen over & over again. 😒 I don’t have the time or energy to live that way so I don’t! But.. even when I don’t & I hear from these people or see them & don’t put up with it, there’s no way around them thinking I am the reason I’m the way I am, I’m not doing enough, I’m not listening to them, I’m not caring enough for what they’re going through because of my disease (I get it more than anyone), and so on... There’s no point in fighting it. I don’t let others opinions determine how I live my life. If you can’t handle me the way I am, adiós! 👋🏼 I will continue to live my best life the way I know how, I will always be my happy self no matter who tries to bring me down, I will always stay positive about any negative situation, I will fight every illness that comes my way & I will keep my best healthcare team by my side. I am #zebrastrong and will always fight for what is right, what I believe in & for the awareness & cure of Primary Immunodeficiencies! ❤️ #lifeofnessleigh

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tripawd.princess

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savealifewithzebrastripes

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tripawd.princess

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vanessaleighfitness

Don’t be afraid of going slow. Be afraid of not trying at all. 👌🏼

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bullmastiff_sam

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makelemonadewithlupus

Ten years ago tonight this guy dropped me off at home and I told him “don’t follow me” before kissing him for the first time and running into my house. (This is probably more information about a romantic relationship than I have ever shared publicly. Don’t get used to it.)

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lifeofnessleigh

The past 2 weeks I’ve felt myself getting weaker. This week I’ve been so much more fatigued than usual, I’m pale with dark circles around my eyes, my muscles burn like I’m working them out doing just about anything & I’ve been in more pain. Today I barely made it through half of the day, canceled my LR Infusion & just got home, can’t stop laying down, so my sister said I should take a nap. I’m a terrible napper. I fight sleeping during the day & resting as much as I should. Although when it was mentioned today, I couldn’t disagree. I’m now in bed ready for a nap & to give my body the rest that it needs from now on. #lifeofnessleigh P.S. - Don’t mind the mess. My bedroom is the last room to unpack & decorate. ☺️

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dcbellaella

Do you get enough protein? 💪🏻 Sounds like common knowledge but did you know most women need anywhere from 80 to 150 grams to heal and have good energy? 😮 Too little protein slows down your liver function, letting estrogen and other toxins build up in the tissues which is a big cause of autoimmune symptoms in the first place. Liver stress raises systemic stress which can affect mood, sleep, and of course, energy. 💥 High quality protein is a game changer if you’re deficient. It was an essential part of my toolkit in eliminating over 20 symptoms naturally. 🤗 Personally I find my energy isn’t great unless I get at least 100 grams of easy-to-digest toxin free, unprocessed protein. 🥚 Another important tip: Balance your protein with an equal amount of healthy carbs. 🍊 A straight protein meal can raise cortisol and cause a stress reaction, and that’s the last thing you want when fighting inflammation! 💥 #neverstopfighting #butyoudontlooksick #rawarrior #eatforlife #eatforhealth #chronicallyill #chronicpain

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brittany.marie8

This place means so much to me in so many ways. It’s hard to even describe how bittersweet it is that this could be my last visit here (as a patient). I literally would not be able to be where I am if it wasn’t for the care I received by the amazing people here. It also led me to my career as a nurse practitioner in genetics, and I can’t imagine ever doing anything else. So much love for this place ❤️❤️

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pomcisland

Temp of 102 😰😢😨 Called the doctor and they want to see him this afternoon #sick😷boy #medicallyfragile #rarediseaseawareness #rarediseasecaregiver #mommayheartache #adrenalinsufficiency #stressdosed #poornate

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tripawd.princess

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m.hall.16

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savealifewithzebrastripes

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sickpoettheory

Back on my bullshit. 💜 Thank you to everyone who wrote nice things to me. I have a Genetics appointment on May 14 to find out more about what’s going on w/ my brain. Tomorrow is also my 1-year LAM-iversary, which is seeming less momentous than I thought it would. But we’ll see how things hold up on the day of. ⚡️ . . . . #lymphangioleiomyomatosis #lifewithlam #lamawareness #tuberoussclerosis #rarediseaseawareness #sickwoman #mtlcafecrawl

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lifeofnessleigh

Calcium is on the lower side so I’ll be talking with my doctors at my next follow-up appts on how to go about that with my elemental diet. Thyroid levels are still off but lower than before so my doctors are just going to continue watching them for now. Had more labs yesterday & one came back negative for infection so far, waiting on the other one still. Hoping to hear from my doctors office soon that hopefully they’ve worked out my PEG placement. Surgeons in my area are being difficult to work with knowing I have CVID. It’s so important to spread awareness for Primary Immunodeficiencies. They’re so rare that most doctors don’t know much about them or are too afraid to take the responsibility of having me as a patient. There’s more of us out there than people realize & we deserve great medical care, awareness & research. Please help raise awareness by learning more about these diseases (the @idfcommunity is a great place to start). It’s important we talk about these rare illnesses! Also, as there is no cure (yet), the only thing helping most of us stay alive is plasma Infusions ( #IVIG & #SCIG). Donate plasma to help save lives, as the supply is low & in demand. 💉 #lifeofnessleigh

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thisbeandnoah

Meet Gilbert! Gilbert has Creatine Transporter Deficiency (CTD) and will be attending the CTD Family Conference thanks to the support of the TSNF Travel Grant Program. As Gilbert's mom states: His days are filled with daycare and school. His evenings are filled with OT, PT, and speech therapies. We end each night with prayers. His older sister, Grace, always adds in with “Please help us find the best cure and treatment for Gilbert.” Visit our website to read more on Gilbert's story. #careaboutrare #tnsf #hope #childneurology #raredisease #rarediseaseawareness #children #findacure

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tripawd.princess

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hotmessbeautyobsessed

These pictures were taken seconds apart. One a seizure, one like nothing happened. This is what a rare disease looks like, this is what a seizure can look like. Always advocate for your babies and never give up 🙌🏻 #momsknowbest #momgut #advocate #raredisease #rarediseaseawareness #mom #glut1 #seizures #awareness #alwaysfight #dontgiveup #dontbackdown #fighter #childhood #disease #rare #miracle #daughter

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inexplicaciones

Sé que últimamente es difícil hablar conmigo, estoy muy cerrada en mí. Sin entrar en detalles; me encuentro mal. Sé que dejo conversaciones en visto, que no soy lineal, que no se puede contar mucho conmigo últimamente y que de alguna manera...he desaparecido. Es una época de introspección, de asimilación, de resaca y resignación. De miedo y dolor. Por no hablar de que voy medicada, lo que le suma a todo un plus de decadencia guapo guapo xD Que en fin, que no es personal, que cuando yo me vea centrada y con fuerzas y capacidad mental para mantener una conversación fluida y lógica volveré a expresarme xD Pido perdón y disculpas a todos los que os he dejado en visto, yo no soy así, me gusta responder y soy una persona extrovertida, es solo que no me da la cabecita 😅 🖤🖤🖤🖤🖤 Os quiero. A los que os quiero, claro 😌😝 #paindisease #invisibledisease #fybromyalgia #chronicfatigue #trigeminalneuralgia #trigeminalneuralgiawarrior #trigeminalneuralgiaawareness #raredisease #rarediseaseawareness

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dcbellaella

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savealifewithzebrastripes

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rememberthegirls

Our founder, Taylor Kane, is now a contributor on The Mighty! Check out her article titled “What It’s Like to Carry the Rare Disease That Took My Father’s Life,” in which she writes about the struggles faced by carriers of x-linked recessive genetic disorders. Link in bio! ~ article originally posted on @sickchickssisters ~ #themighty #raredisease #rarediseaseawareness #rarediseasecarrier #health #carrier #adrenoleukodystrophy #rememberthegirls #nonprofit #nonprofitorganization

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lifeofnessleigh

Having a port, I don’t get my blood drawn peripherally as often. It has made a drastic difference in saving my veins. Not only that but I get regular fluids to help with my constant dehydration, POTS, so being more hydrated helps as well. I was super excited that my blood draws this week were so much easier than in the past. I could tell a difference even within the days I got the blood draws. Monday, when I got my LR’s before my IVIG, I was super hydrated but even getting fluids PO, the next day I wasn’t as hydrated & I just asked them to go for my hand haha. Idk why but my hand doesn’t hurt as bad & is easier to access than most other people. My Endocrinologist is testing my calcium, creatinine, bone density & a couple thyroid tests. My Immuno is doing labs to evaluate my increased bruising. #lifeofnessleigh

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lifeofnessleigh

Allergy/Immunology Update: Doctor is working on corresponding with a surgeon for my PEG placement approval. Continuing nasal saline rinses for allergic rhinitis symptoms. Medication options recommended for GI symptoms from formula. Continuous work toward expanding my diet & keeping foods I tolerate a part of my diet twice a week to maintain tolerance. Lab order to evaluate increased bruising. #lifeofnessleigh

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lifeofnessleigh

Made it through 4/8 servings yesterday but had a salad, turkey patty lettuce wrap & some fries. 😬 As good as it tasted, it wasn’t the best decision for my allergies. Plus the potatoes are inflammatory & I also have a very difficult time swallowing them due to my esophageal motility disorder. But hey, I enjoyed it while it lasted... I sure do miss 🍔’s & 🍟’s. I need to be getting 8 servings of formula in daily from now on. My Dietician & I agreed that EleCareJr will be my baseline source of nutrition until I get my PEG placed because there’s too many factors when it comes to my allergies. Once I get feeds figured out, I’ll start reintroductions to other foods with my Doctors discretion. Foods I know I tolerate some of, such as turkey, I’ll be having a little bit of twice a week to maintain my tolerance. Plus we’re working on my fiber intake with a goal to reach 25 grams daily. I’m only at 5 grams currently but the plan is to up my dose 2-3 grams every 3 days. #lifeofnessleigh

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collierstronger

FULL RECOVERY // A bad respiratory infection sent us to the ER for an overnight stint on Monday, but Collier is feeling better and we’re back in business. His erratic breathing worried Mommy & Daddy so we decided to get it checked out stat. Luckily, we caught it before anything got too serious. . . He was so well-behaved for the x-rays, vital checks, and nebulizer I was proud and sad at the same time. All the poking and prodding and beeping and shining lights are so normal to him that at 3am he’s still super cooperative. But he takes it like a champ so I will too. Mommy’s little superhero for real ❤️ . . . #lifewithCDash #CollierStronger #hypotonia #hypotoniaawareness #specialneeds #specialneedskid #specialneedsmom #specialneedsparenting #momlife #queenskid #nyckid #queensmom #nycmom #TeamCollier #KIF1A #KIF1Akid #raredisease #rarediseaseawareness #momswithcameras #momsofIG #kidsofIG #theraplay #toddlersofinstagram #toddlerswag #toddlersofig #blackboyjoy

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gabmasala

Thesis the reason why I haven’t posted much yet. My life has been put on pause as I scramble to finish my final requirements before my last finals week ✨ . . X-Linked Dystonia Parkinsonism or XDP is a rare hereditary neurodegenerative movement disorder. It is characterized by varying severities of dystonia (uncontrollable muscle contractions that lead to twisting and abnormal postures) and Parkinson’s disease (tremors, slowness of movement, masked facies). It is endemic to the Philippines particularly in the Panay Island of the Visayas Region. It is physically debilitating and like dystonia and Parkinson’s individually, has no known cure yet. Patients who suffer from this do not have a singular and readily-available source of information about XDP. . . HALIGI is my project that aims to raise awareness on XDP towards Metro Manila-based patients and their families. Spread across 3 main platforms—website, 4-part planner, poster of stretches—HALIGI provides nuanced information not only about the nature of the disease but also matters that may arise in their everyday lives. The project wishes to equip the patients and their families with such information in order to reduce feelings of isolation and hopelessness while empowering them. It also introduces the patients to Sunshine Care Foundation—the only Philippine organization that champions for XDP patients whose operations are currently limited to the Visayan region only (with plans to expand to Metro Manila). . . I’ll post more about my thesis in the coming days. For now, I just wanted to update this account with what has been consuming me for the past 2 sems. It has been a wild and deeply emotional journey. I’m glad I took on this project and I can only hope to be a helpful instrument in the lives of the XDP patients. . . Catch HALIGI and the other equally amazing projects by my batchmates in Frontiers: ID Thesis Exhibit. They will all be on display until the 25th! . . 🌈 Senior’s Creative Output aka Thesis, 2018 . #byebyeschool #graphicdesign #xdp #xlinkeddystoniaparkinsonismawareness #xlinkeddystoniaparkinsonism #haligi #webdesign #printdesign #raredisease #rarediseaseawareness #panayisland

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tripawd.princess

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autoimmuneadvocate

Never did I imagine one day I’d wake up and my life would be changed forever... But that’s exactly what happened. Life has a funny way of changing at a moments notice and you’re having to deal with your new “normal.” I went to bed completely fine one evening and woke up the next day very sick. Little did I know my body was waging a war on the inside and it was about to explode. From this moment on, this would become a daily struggle for me for the rest of my life. It’s an odd thing when your own body betrays you. It’s such a strange feeling.. this betrayal pushed me towards so much anger, resentment, and loss of hope for many years. The pain that comes with my illness is constant and always seems to remind me I’m not “normal” and might not ever be again. Obsessing over my illness and trying to find answers became my main goal for five years. I was hoping this would ultimately bring me back to being the fun loving person I was before my illness hit. Years later, after many tests & doctors, and lots of tears my answers finally were in front of me. My diagnosis from the Mayo Clinic hit me like a ton of bricks all at once. The reality of being told there’s no cure for what you have is like getting punched in the gut. My entire world stopped in that moment. For years I was on a journey trying to find answers. I thought I would have my life back after my diagnosis. I was so wrong.. Learning to cope with the fact I’ll never be the same is still a battle. After countless procedures, further testing, and more medicine, I’m still not “better.” My quality of life is decent for right now, but the fear I could get worse at anytime is a lot of anxiety to handle. Finding my new normal is still a work in progress and I’m still learning my physical limits. . . #autoimmunedisease #autoimmuneblogger #autoimmunelife #chronicillness #rarediseaseawareness #rarediseases

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sickpoettheory

Shitty, rotten, no good day. 🌩🌩 Today at oncology was supposed to be my last hospital checkup in 6 months. But apparently, my brain MRI came back with two tumours. Up until now, these scans had always been completely clear. I’m devastated for lack of a stronger word. My geneticist asked for a follow-up with me on Monday and a “non-urgent” EEG test to be scheduled. Oh, and my kidney tumours have grown again after being stable for 6 months. The urologist initiated the idea that they would have to operate eventually if things kept progressing. So, you know, fuck this fucking disease. . . . . #lymphangioleiomyomatosis #lamawareness #rarediseaseawareness #sickwoman #hospitallife #tsc #lifewithlam #tuberoussclerosis

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kiwid10t

Eliot finally got a wheelchair and they look damn good in it. (hashtags courtesy of them) #wheelchairuser #wheelchaircuiser #ehlersdanlossyndrome #rarediseaseawareness #hypermobility #disBABEled

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jimmy_tue

Welcome to Ramsgate, England! All the way from #Texas, 'Dynamite the Histio Dragon' 😊. Crocheted by hand by Jennifer Mitchell and posted free of charge to anyone suffering #Histiocytosis or in memory of Histio Angels, in support of Liam's Lighthouse Foundation. He must be jetlagged! https://www.liamslighthousefoundation.org https://www.liamslighthousefoundation.org/dynamite.html https://www.histio.org #DynamiteOnTour #histiodragon #dynamitethehistiodragon #histowarrior #histioangel #rarediseaseawareness #histioaware #oneinamillion #liamslighthousefoundation #ramsgate #ramsgatemarina

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tripawd.princess

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rarerevolutionmagazine

Only 10 DAYS until our 1st Rare Revolutionaries meet-up in Grampian on the 27th April! We hope you'll join us for this relaxed opportunity to meet others who are living with Rare in Grampian. Click the link below for tickets and we really hope to see you there! https://www.eventbrite.co.uk/e/rarerevolutionaries-meet-up-grampian-network-tickets-44628242274 #rarerevolution #RareDiseaseAwareness #MeetUp #aberdeen #events #JoinUs

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rarediseasessa

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princessdonovan

Behind ever scar is an untold story of survival 🙂🍀🤘💚 #onemonthpostop #thyroidectomy #thyroidscar #rarediseaseawareness #cowdensyndrome #cowdensyndromeawareness #blessed🙏

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cf.schibel

One of my favorite logo projects will continue to grow as little Ruthie does. 💖 Shirts for the #tuberoussclerosis walk this year will be NEON PINK! Look how much her foot grew in a year too, so sweet. @mcdirmid is a badass and her kiddos sure are lucky to have her as a Mom. If you want to donate to a good cause and help bring awareness to those with this #raredisease I have included the link to donate on my profile. 💕 • • • • #tsc #tscalliance #tuberoussclerosiscomplex #stepforward #design #graphicdesign #graphicdesigner #freelance #freelancer #freelancedesigner #freelancedesign #logo #logoart #logodesigner #logos #adventureruthie #tsc2018 #walk #fundraiser #rarediseaseawareness #designers #seattle #seattlewa #spokanebusiness #spokane #spokanedoesntsuck #spokanewa #pnw

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thesaltywarriors

ADELINE’S MARKET // these goody bags are going to be so great! It’s all coming together guys, I’m so excited I could cry. Link in profile. #adelinesmarket

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lemongrovemarket

THANK YOU BAGS are going to ROCK! We have items sponsored by: Burt’s Bees 🐝, Seaweed Bath Co, Girl Be Brave, California Olive Ranch & MORE! First 💯 tickets sold for #adelinesmarket get a Thank You bag💜

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andi_capped

It's been a rough infusion day, but I'm incredibly grateful that I am able to have access to the lifesaving medication Soliris to not only protect me, but my little kidney bean. Always grateful, even on the tough days. ❤ #soliristhewonderdrug #infusionday #aHUSstrong #atypicalHUS #rarediseaseawareness #kidneytransplant #transplantSTRONG #transplantlife #benadryl #prednisone #infusion #gratitude #goodandbad #iamalive #selfcare #recover #medication #icarebecauseimrare

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because_of_blake

Raffle up and running.... £1 per ticket we have some amazing prizes please see the list. Drawn on the 1st of June #BecauseOfBlakeWeRaffle #HistioUk #CancerSucks #RareDiseaseAwareness #ForOurBeautifulBoyBlake #💙

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jennieclifts88

I wanted to share my post from my private page to raise awareness of this rare genetic syndrome— 💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙💙 #Repost @jenacar88 with @get_repost ・・・ As most of you already know Jaxson has been in and out of the hospital since he was born almost fourteen months ago. Most of you know he has Laryngomalacia, sleep apnea, developmental delays, speech delays, microcephaly, gastrointestinal issues, and he was failure to thrive. He’s seen many specialists—ENT, neurosurgeon, cranial facial, ophthalmologist, cardiologist, gastroenterologist, pulmonologist, speech therapist, feeding therapist, physical therapist, and lastly a geneticist. Fighting endlessly to find an answer we had Jaxson’s DNA tested with the microarray and nothing came back after our first genetics appointment. When we went back a second time we had the WGS (whole genome sequencing) done. Four months later we finally got an answer—a rare genetic disorder. Jaxson is exhibiting symptoms from the DYRK1A syndrome. There isn’t a lot of literature on this disorder because it is fairly new in the genetic community. Left of the picture are symptoms that are associated with this syndrome—our future is pretty much uncertain at this point. We’ve joined a Facebook support group with families who didn’t find out their loved ones had this disorder until they were well into their teens and early twenties. I’m glad we were able to get this diagnosis so early so we can get him all of the help he needs. We just want to thank everyone who has been here for us and for all of the prayers. WE FINALLY GOT ANSWERS!!!!!! 💕 #dyrk1asyndrome #DYRK1Aawareness #laryngomalaciawarrior #rarediseaseawareness #militarywife #girlswholift #boymom #copingwithlm

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tripawd.princess

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dcbellaella

Shrimp, my favorite copper source! 🍤 Copper is an important part of a good anti-inflammatory and anti-aging diet. 💪🏻 Copper is antibacterial, and can also help overcome nutrient malabsorption, and improve cellular health. 🙌🏻 Copper deficiency can cause digestive problems which can of course, affect the whole body. 😲 It can also cause fatigue, joint pain, bruising, low body temperature (AND hint* hint* I’VE NEVER SEEN ANYONE WITH RA WHO DIDN’T HAVE A LOW TEMP), brittle bones, muscle pain, and skin and hair issues. 🤒 I recommend avoiding any supplements as they can be dangerous, and instead logging your food intake and making sure you’re getting enough copper through your diet. The app called cronometer is what I use to track both macro and micronutrients. 📲 Chances are you won’t be able to supplement your way to a healthy, pain free life, but you CAN make small changes, one step at a time, that renew your entire body. That’s how I permanently eliminated my pain. 😁 I aim to eat shrimp once a week, and also listen to my body when deciding what to eat...More on that later. ♥️ P.S. Always opt for sustainable ocean-caught when possible! . . . #rawarrior #rheum

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brittany.marie8

Heading back to the cold is tough after the event in Florida this weekend ☀️

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christina.laur

My sunshine on this cloudy day 🌤

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