Flare_eons

✨ I’m a 🤒 shiny✨ Rare disease patient & feverish. 100% 🇲🇽. Former 🦞 keeper & 🦌 wrangler. Streaming cozy games on Twitch on fever days!

[Flare_eons @FlareEons]

Putting my story out here! After becoming sick with fevers, just found out I have a #PeriodicFever syndrome, a very rare one. Had to take a break from work & grad school, but wanna raise awareness of rare diseases on @Twitch. Come chill with us! Link in bio. #RheumTwitter

[Flare_eons @FlareEons]

Researcher @MichaelOmbrello called @NIH “a bastion of hope” in this great article @NewYorker. As a new patient there, this hits home 💯. NIH gave me a test treatment this week. It was the absolute best 12 hrs of my entire life. I never knew life w/o pain. 🙏 NIH

[Grant Schulert, MD PhD @GrantSchulert]

My friend @MichaelOmbrello would be too humble to share, but a great read from @NewYorker on the experience of being a “Rare as One” is patient with rheumatic disease, and the great work done @NIH_NIAMS

Nobody Has My Condition But Me https://t.co/TxZ4gel5wg via @NewYorker

[Flare_eons @FlareEons]

@rlcolson I just started this yesterday!

[The Lancet Rheumatology @TheLancetRheum]

NEW Review—Brain mapping inflammatory-arthritis-related #fatigue in the pursuit of novel therapeutics https://t.co/wPsErC25NH @salim_alwasity @GordonDW_MI8 @UofGlasgow

[Flare_eons @FlareEons]

It’s oddly comforting to know I’m not alone! Maybe we can call this the rare disease experience?
Much gratitude to researchers @NIH for helping people like me every day!

[Grant Schulert, MD PhD @GrantSchulert]

My friend @MichaelOmbrello would be too humble to share, but a great read from @NewYorker on the experience of being a “Rare as One” is patient with rheumatic disease, and the great work done @NIH_NIAMS

Nobody Has My Condition But Me https://t.co/TxZ4gel5wg via @NewYorker

[Cassie + Friends Society @CAFsociety]

Join us on February 28th (Rare Disease Day) to explore the role of genetics in your child's rheumatic disease with @DrAshM2 , a Clinic Medical Geneticist at Alberta Children's Hospital with a special interest in pediatric rheumatology. Register @ https://t.co/A4JGiP20gr
#Genetics

[Flare_eons @FlareEons]

@GrantSchulert @AAlliance_SAID @MichaelOmbrello @NewYorker @NIH_NIAMS Thanks for sharing! I also was just at NIH for something “weird,” and had 22 vials of blood taken, and it’s oddly comforting to know I’m not alone in this ☺️

[Flare_eons @FlareEons]

@ZShaheenMdPhD @MichaelOmbrello I’m so scared Cigna will do that for my anakinra 🥺

[Flare_eons @FlareEons]

@JavizGaming I remember my friend got one, i think at the 1st movie premier? We were in awe!

[Flare_eons @FlareEons]

Hubby and I are live and playing @EDF_OFFICIAL_EN our fave game, come chill with us!
https://t.co/xBdIcWDZK1

[Flare_eons @FlareEons]

After trying to see our family since Friday, with endless ✈️ cancellations, we feel defeated. But a kind neighbor I’ve never met reached out with 🍪 and hot cocoa just now.🎄 was cancelled but this little gesture made us feel so much better 🥹 Hope we can pay it forward soon

[Flare_eons @FlareEons]

@kimsterrz Heck yeah! Flights cancelled for 5 days we are lonely for xmas too

[Flare_eons @FlareEons]

@RogueVictorian @birgitomo

[Flare_eons @FlareEons]

@RogueVictorian @birgitomo I left hc too, for my own survival. So sorry to all hc workers who suffer while doing a selfless job. I wish we were honored as the heroes we are.

[Flare_eons @FlareEons]

@itspokeminh Idk who you r but congrats that’s amazing

[Flare_eons @FlareEons]

@ConservedTrash @themainvoli @LunaFashion22

[Flare_eons @FlareEons]

@JavizGaming That’s my favorite card and it was from my first pack ever

[Flare_eons @FlareEons]

Trying to re-wire my desk, but I guess I’ll wait until nap time is over.
Are cables comfy nap spots?
#CatsOfTwitter #Streaming

[Flare_eons @FlareEons]

@TTVMrdubtown @themainvoli @christinekx0x @derrickharmer