#rarediseasewarrior

#greenscreen Recently I’ve received SO MANY DMs, emails and questions about the #raredisease I have #fibromusculardysplasia so I thought it was time to do a video about it. There needs to be more awareness on #fmd anyways. Yes this is long. You can always use the 2x button, but for the #fmdwarriors out there, I know I was like a sponge when I was first diagnosed so I want to share everything I can with you. There are 2 parts to this. And I am ALWAYS available to talk #fibromusculardysplaiadisease #fibromusculardysplasiawareness at anytime #fibromusculardysplasiafighter #fibromusculardysplasiawarrior #spoonie #raredisease #chronicillness #chronicpain #chronicillnessawareness #rarediseaseawareness #spoonielife #spooniesoftiktok #spoonies #migraine #stroke #strokeawareness #heartattack #heartattackawareness #SCAD #arterialdissection #aneurysm #fmdsa #beadofpearls #awareness created by 716girlinatl with 716girlinatl’s original sound

Recently I’ve received SO MANY DMs, emails and questions about the I have so I thought it was time to do a video about it. There needs to be more awareness on anyways. Yes this is long. You can always use the 2x button, but for the out there, I know I was like a sponge when I was first diagnosed so I want to share everything I can with you. There are 2 parts to this. And I am ALWAYS available to talk at anytime

💖💕 Bethany, you are a light in this world and a gift to every person who meets you. You deserve the best. We love you ❤️ Happy Rare Disease Day! You are truly a rare gift! . . . #raredisease #rarediseasewarrior #rarediseaseday #advocatelikeamother #disabilityrightsarehumanrights #disabilityrights #disabilityadvocate #raremom #disabilityinclusion #childrenwithdisabilities #5pminussyndrome #criduchatsyndrome #criduchat #specialeducation #humanrightscampaign #disabilityactivist #disabilityawareness #disability created by Kristin Faith Evans with Keala Settle & The Greatest Showman Ensemble’s This Is Me

Can you imagine going 8 YEARS without a diagnosis!?!?

We raise our voices for every rare disease. 🧬 Such a important day to raise awareness for rare conditions 🥹🫶🏾

The craziest thing about having 2 "rare diseases" is that they're estimated to not actually be rare, just under diagnosed due to lack of awareness

Man doing this tt made me ball my eyes out. I wouldn’t trade my son for the world but the day we found out was the worst day of my life. 😢💔

There is no cure for polycystic liver disease, it is a hidden disease and most people think you’re just pregnant.

Aria's wish was granted! Our brave girl has been battling PKAN, a rare and debilitating neurological disorder that affects the brain, but that didn't stop her from shining bright at the Happiest Place on Earth! Diagnosed with a genetic disorder that brings daily challenges, Aria's journey hasn't been easy, but she's taught us that even in the toughest moments, there's always room for joy and wonder.
Make-A-Wish sent us on an unforgettable adventure to Disney World, and we're forever grateful for the memories we made together! Aria's story is one of resilience and courage, and we're honored to share her story with the world.

JEB is cruel. Every warrior deserves a cure 💙🦋

I’m on a mission to help cure my son’s rare brain disease and leave a legacy where one day there is a treatment for every child born with this devatatingly rare disease; CTD,

Living with a rare disease be like…

#rarediseaseday #showyourstripes #rareisbeautiful #rarediseaseawareness #rarediseasewarrior #erythromelalgia #erythromelalgiawarriors #erythromelalgiaawareness #rarechild #zebrastrong💜🦓 #awarenessvideo #injuredchildren #nolansjourney #nolans_journey created by NaNa butt with NaNa butt’s original sound

Surgery time!

my boy, such a warrior🧠🩵

Reposting because people have questions.

On #rarediseaseday we honor the strength, resilience, and love that fuels the journey of rare warriors and their caregivers. Every life, every story, is worth celebrating. Happy rare disease day, friends🫶🦓 #rarediseaseparenting #medicallycomplexparenting #medicalmama #raremama #caregiver #rarediseaseawareness #raredisease created by Jillian Arnold with Coffee Piano Relaxing’s Sweet Moments

On we honor the strength, resilience, and love that fuels the journey of rare warriors and their caregivers. Every life, every story, is worth celebrating. Happy rare disease day, friends🫶🦓

#MedicalMom #costellosyndrome #fyp #heartwarrior #chdwarrior #raredisease #chla #openheartsurgerysurvivor #nicuwarrior #miraclebaby #godneverfailsus #IkerBetito #congenitalheartdisease #inspiration #rarebeauty created by Blanca Téllez🎀 with Blanca Téllez🎀’s original sound

#raredisease #rarediseaseawareness #dercumsdisease #dercumsdiseasewarrior #angiolipoma #medicaltiktok created by Birdie with Metrow Ar’s Love Of My Life

Part 2…again, yes this is long. Don’t like it, don’t listen. But when I was first diagnosed with #fibromusculardysplasia I could not get enough information, I was #scared, had so much #anxiety, and had nowhere to turn. I want to raise #awareness for #fmd and help any #fmdwarriors out there who might be feeling the same way. Who might have questions or not know where to go. I hope this helps some. Still have #questions? Add them in the #comments or shoot me a DM. #fibromusculardysplaiadisease #fibromusculardysplasiafighter #fibromusculardysplasiawarrior #fibromusculardysplasiaawareness #fmdsa #raredisease #chronicillness #chronicpain #chronicillnessawareness #spoonie #spoonies #spooniesoftiktok #spooniesupport #migraine #migraines #strokeawareness #heartattackawareness #scad #aneurysmawareness #arterialdissection #letsdiscuss #investigativereporter #trending #fyp #fyppppppppppppppppppppppp created by 716girlinatl with 716girlinatl’s original sound

Part 2…again, yes this is long. Don’t like it, don’t listen. But when I was first diagnosed with I could not get enough information, I was , had so much , and had nowhere to turn. I want to raise for and help any out there who might be feeling the same way. Who might have questions or not know where to go. I hope this helps some. Still have Add them in the or shoot me a DM.