#raredisease

MOST RECENT

I am EXTREMELY grateful that my EDS doesnt hinder my ability to play fantastic video games. One day it might so im trying to game as much as i possibly can right now. #EDS #heds #ehlersdanlossyndrome #ehlersdanlos #raredisease #chronicillness #chronicpain #pots #cci #invisibleillnessawareness #neckbrace #cervicalcollar

It’s @theprassassin’s birfday y’all. In the last year this dude has rolled #BJJ for 24 freakish hours straight to fundraise for rare disease awareness; won the @battleofneworleansmma belt; opened and devoted himself to an all-inclusive and high quality MMA program @nola_mma servicing a community that desperately needs it; created a safe environment for women to train; taught free self-defense seminars to at-risk women and the LQBTQA community; bravely tackled personal demons; wrestled with major adversity; and consumed as many @snobliz goodies as possible. He’s also done everything he can to help keep me alive with rare disease rocking both our worlds. Do the right thing and drop this boy some love. He has earned it. #birthdayboyπŸŽ‰ #twogeminis #oss #combatsports #heyyyy #earthmagic #reallife #mindovermatter #suckitCIPO #invisibleillness #spoonielife #strugglewell #health #wellness #healing #recovery #raredisease #dysmotility #gastroparesis #bjj #jiujitsulifestyle #bjjgirls #moveitorloseit #followyournola #nolastrong @theprassassin

PKU Awareness Month Post:
BREAKING NEWS!!!!
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Today Palyinziq (formerly named Peg-Pal and Pegvaliase) was approved by the FDA for the treatment of PKU!! (For use in adults 18+) Palyinziq has shown great success in the treatment of PKU for many adults. Allowing, for many, a completely normal diet. The treatment has side effects, and takes time and adjustments to get the correct dosing. But, it’s really an amazing step for the PKU community!
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I’m not ready to jump right in and start it. For one, I’m still breastfeeding, so I can’t. But, I also personally have heard of some of the agony of side effects and I know someone who had a very scary anaphylactic reaction and cannot take the drug. So, for now, I’ll be watching carefully, and talk with my metabolic team. But, I’m hopeful.
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Nonetheless...this is HUGE for the metabolic and rare disease world! Woohoo!! Happy PKU Awareness Month!
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#pkuawarenessmonth #pkuawarenessmonth2018 #phenylketonuria #phenylalanine #lowpro #lowprotein #pkudiet #lowprodiet #pkuadult #biomarin #palyinziq #pegpal #pkutreatment #advancesinpku #metabolicdisorder #raredisease #newbornscreening #metabolicclinic

Forty-first 5-Star review & it never gets old. This makes my heart so happy to see these sleeves in real life!!! #piccline #raredisease #hlh #chemo #etsy #fivestar #review #irl

Chargie of the Day: Sara
Hey, I’m Sara and you’ve probably seen me around here lately. I do some of the stories here on the Unchargeables, and the last few days I have been doing some of the posts too. I’m a newbie in the community but I’ve been a chargie for over 8 years. I just recently started writing about it on my blog, and talking about my health these past few months. It took me a LONG time to open up about my health struggles, so for anyone out there still in that boat, I feel you. To sum up a long story, in 2010 I was riding on an ATV when it tipped over and landed on my chest. I tore my aorta among other life threatening injuries and broken bones and was airlifted to a hospital in Memphis, TN where they saved my life by placing stents inside my aorta. I live in Chicago, but was in Tennessee for a weekend trip! I am a very lucky girl to be alive to talk about it. Since then I’ve had two bypass surgeries (one followed by a clot), back surgery, and just last month I was diagnosed with a torn vertebral artery (an artery that sends blood to the brain and usually leads to stroke). I listened to my body (severe pain)and went to a really great hospital in Chicago and got diagnosed and put on medication that saved me from a stroke. In total I have 31 diagnoses, and am trying really hard to find something to help with my pain. I start today at a new treatment facility for Pain Management and PT, the Shirley Ryan Ability Lab, and is supposed to be among the best in the country, so wish me luck, and follow along as I’ll be posting stories about it here on the Chargies, and my page @sarabink44
Stay strong Chargies! ❀️ Sara
β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”-
🌠Win unique chronic illness clothes from The Unchargeables Shop. Link to the giveaway in bio! β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”
#theUnchargeables #Spoonie #Chargie #ChronicInsta #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #raredisease #mybrokenaorta #chargieoftheday

πŸ’œπŸŒ» you’re so much stronger than you know πŸ’ž

Peace out!
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This is how we feel at the end of every clinic day. Get us outta here!
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Some clinic visits are only a couple hours. Our record was nine hours. We are so grateful for the amazing nurses, doctors, social workers, pharmacists and Child Life that not only take care of the boys but our family. We've spent every Thursday at clinic since we came home in December. These people have become a part of our family and our normal. We couldn't do it without them!
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#pnpdeficiency #scidwarrior #bonemarrowtransplant #peaceout #goinghome #oursecondhome #Stollery #raredisease

Looking to be more focused & Creative πŸ€” to Relax & have a Better Sleep πŸŒ› to have a Relief of Pain πŸ˜… or just get a natural Energy Boost 😎 All in one healthy plant … Enjoy 🀩 πŸ’• #Bali #amazing 120k idr (150gr) #sleep #sleepbetter #sleepwell #life #painrelief #anxiety #painkiller #pain #love #Diabetes #immunesystem #bloodsugar #tagsforlikes #relaxation #boost #healthcare #Herbal #Samadi #energy #green #nature #photo #Migraine #ChronicPain #RareDisease

Curt and I went kayaking this morning! I must say, I didnt do as bad as I expected! Definitely sore, but my energy level is increasing again!

#chronicillness #heartsurgery #raredisease #rarediseaseawarness #medicallyinterestingΒ  #bodytrophies #defytheodds #fightforacure #fightforthecauseΒ  #kdheartwarriorΒ  #openheartsurgery #sternotomyscar #undiagnosable #warrior #openheartsurgerysurvivor #survivor #pacemaker

I am bag lady now! This is what is keeping me alive. This is only a part of what normally is on the pole as well.

Today was rough. Tomorrow will get better.

#sick #recovery #100to0 #andbackagain #instamood #igers #happy #staypositive #warrior #fighter #raredisease #tubie #epilepsy #transversemyelitis #gastroparesis #mcas #hospital #tpn #nutrition

Today is the official Go Orange for Prader-Willi Syndrome Day! 🧑

Some of our team members are wearing orange attire to raise awareness for PWS!

Next Wednesday, we're having our own afternoon tea, where we'll be donning orange gear once again to celebrate another successful year of campaigning.

#goorangeforpws #pws #ilovesomeonewithpws #praderwillisyndrome #conn3ctedlife #awarenessleadstoacceptance #rare #raredisease #sydney #australia #agency #agencylife

β€œThis is Violet, she is 16months old. Every day she is learning new things, making us as a family learn new things. She has an amazing character and laughs all day long. She loves being with her siblings even if that means play fighting with her brother! Throughout this whole experience Violet has shown us strength, positivity, love and laughter. Appreciating the little things and learning to love peppa pig throughout the night! She is such an inspiration to me that I wanted to start an awareness page to help others with the same condition, support families through the rough times and teach them the Violet way of doing it with a smile. She is just simply amazing!” ❀️✨ @violetsglow #IAMABLE #coatsdisease #extraordinary #ablemecharity

Click on the link in Bio to enter to win!! ————————————————————————❀️ Sara β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”
🌠Win unique chronic illness clothes from The Unchargeables Shop. Link to the giveaway in bio! β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”
#theUnchargeables #Spoonie #Chargie #ChronicInsta #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #raredisease

Within the last two years, it’s hard to look at my body marked with scars of every medical obstacle that I have ever faced. Contrary to popular belief, scars are not ugly; Scars are beautiful. My scars are beautiful because they tell stories of how I overcame obstacles and came out of those obstacles stronger than ever. At the same time, they are big reminders that I can overcome anything with God by my side. My journey might not have been easy, but it has made me into the strong, courageous and brave woman that I am today. If I could choose to be healthy again, or to continue being sick, I would still choose this life because it has made me appreciate even the smallest things that everyone takes for granted. Thank you God for another beautiful day on this earth. 32 times in 2.5 years I was robbed of the sun shining on my face, breeze blowing through my hair, laughter and chatter amongst people, and birds singing in tall trees while I was confined to a hospital bed. In this time, I have learned that God is bigger than my scars and bigger than my illness and because of these obstacles that I am facing, my faith has been stronger than ever. #LetGoLetGod Remember, scars are a reminder that you are an overcomer and a survivor, they are not a sign of weakness. Thank you friends for all of your support throughout my journey. God bless you all! #SevereAplasticAnemiaAwareness #PancytopeniaAwareness #BoneMarrowFailureAwareness #RareDisease #ImRare #FightForTheRedAndWhite #KristinLovesLife #KristinStrong #Fighter #ThisOnesAFighter #FightingLikeAGirl #GodsGotThis #LetGoLetGod #ImFightingARareAndTerminalIllness #WhatsYourSuperPower #DyingToLive #PhilippiansFourThirteen #Strength #NEGU #NeverEVERGiveUp #TeamKristinNeverGivesUp #KristinsKrew #aCureForKris #KristinKicksSevereAplasticAnemia #TeamKristin

✨Can you believe this delicious smoothie I made for dinner has almost 600 calories?! I’m started to get the hang of this whole liquid diet while trying to maintain a healthy caloric intake. My favorite caloric addition to my smoothies is coconut oil πŸ₯₯ ...and I also sometimes use sesame seed oil. I’d love some more pointers to add calories to my liquids... I’m gluten free and vegan, so that really limits my options.
I’m also SUPER willing to help brainstorm with anyone who is going through the same GI issues... can you believe that I haven’t eaten real solid food since December.😳 It really is weird looking back at when I could actually eat and drink beer (both my favorites!) I’ve lost 50 pounds.. i look different. I’m hoping my doctors can figure out why my inside have an attitude! Gastric emptying study is next!βœ¨πŸ’›
I hope all is well with you, wherever you may be!
#liquiddiet #backwardscaloriecounting #IBD #chronicgastritis #chronicillness #chronicpain #raredisease #eds #heds #pots #mcas #mcad #ehlersdanlos #ehlersdanlossyndrome #mastcells #hypermobleehlersdanlossyndrome #dysautonomia #mastcellactivationdisorder #mastcellactivationsyndrome

Chronic illness can be so unpredictable πŸ€·β€β™€οΈ 8:50am I clocked out at work; within less than an hour I was in the ER hooked up to a heart monitor πŸ€¦β€β™€οΈ The last week or two have been great β€” I’ve had more energy, less symptoms & generally feeling stronger πŸ’ͺ🏼 Last weekend I got a fever, but I didn’t think anything of it & it went away. Yesterday I spent most of the day puking & terribly nauseous β€” at work, which was not so fun πŸ˜… And today, brought vertigo, belly pain, chest pain & shortness of breath
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This is the nature of my autoimmune illness β€” anything that seems new or foreign (even if it’s something naturally MADE by my body) causes an attack of antibodies. Antibodies are great in healthy people who get viruses, etc. but when there’s no real threat (like a virus) they have to go somewhere & for me that means my autonomic nervous system gets temporarily ambushed 🧠
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#fightlikeawarrior #chronicillness #invisibleillness #butyoudontlooksick #raredisease #spoonielife #neveradullmoment #progress #empowered #autoimmunedisease #lymedisease #spoonie #fight #healthjourney #wellness #advocate #awareness #justbreathe #takebackyourlife #peoplehopetribe #overcome #differentnotless #dayinthelife #elhersdanlossyndrome #expecttheunexpected #medicallycomplex #antibodies #autonomicdysfunction #autoimmuneencephalomyelitis #teamhighlightreal

Do you or a family member suffer from Fabry? This bracelet is an amazing way to bring awareness and to show your support for those who have been diagnosed. This is just one design I have put together. Please let me know if you'd like to design your own!

http://keepcollective.com/with/kelliejohnson13

#fabrydisease #raredisease #customize #showsupport #awareness

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