Infographic with information about Muckle-Wells Syndrome, a rare genetic disorder that falls under the category of Cryopyrin-Associated Periodic Syndrome (CAPS() and has symptoms such as fevers, skin rashes, joint pain, pinkeye, hearing loss, and kidney dysfunction.

Muckle-Wells syndrome is a rare autoinflammatory disease that can cause recurrent fevers, rash, joint pain, and even hearing loss if left untreated. Raising awareness helps lead to earlier diagnosis & better care. 💙

Learn more:zurl.co/GOeI1

#RareDisease #AiArthritis #Autoinflammatory #MuckleWells

Our nurse came today to give us our #Ilaris. Every 8 weeks, no fail, for the rest of our lives. $16K each dose = $100K+\year\person for my oldest daughter and I.

Counting our blessings, today and every day.

#MuckleWells #CAPS #RareDisease @CdnCAPSNet

A #Rheumatology podcast with episodes that specifically discuss Cryopyrin Associated Periodic Syndromes - #CAPS #MWS #MuckleWells #FCAS #NOMID #CINCA



Also check out to learn more.

“Inhibitors of the innate immune system’s NLRP3 inflammasome promise potential in Parkinson disease, Alzheimer disease, non-alcoholic steatohepatitis, gout and much more, catching the eye of Novartis, Genentech and others.”
#raredisease #CAPS #MuckleWells

Here's the Youtube video of my TED-style talk from @McGill_rareDIG's #rarediseaseday event, #rareDIG2019:

"Dr. Google and the Standard of Care"


#raredisease #Advocacy #DrGoogle #BigData #CAPS #MuckleWells @ErikaKleiderman @raredisorders @phenotips

Meta-Lia.
#SickkidsVStheOdds
#raredisease
#CAPS #MuckleWells #MWS

#RareDiseaseDay #Toronto They're going to let me speak again :) #mucklewells #CAPS #autoinflammatory #RareDisease

2/.. I am a #raredisease #patient who has #MuckleWells #Syndrome. I have an episodic disability. I have experienced episodic #rashes, #arthritis, #bloodshot eyes, #headaches, #fevers & #hearing loss my whole life. This is my story: ...

Skyelah's #raredisease Story: Living with #MuckleWells Syndrome (#CAPS #MWS #NOMID #FCAS) via @complexchildmag

Only difference between #MuckleWells (MWS) and #FCAS is that MWS is not triggered by cold & can lead to amyloidosis, organ failure & death.

In Beijing to speak @ #iCORD2017. Registration today and then two jam-packed days of learning & connecting ahead! #raredisease #mucklewells

I wouldn't wish #mucklewells syndrome on my worst enemy... unless my enemy was a mouse in Dr. @ronald_cohn's @SickKidsNews lab ;) #CRISPR

#Ilaris is used for CAPS, including #mucklewells, #NOMID & #FCAS. Visit to learn more.

1 year ago today that I received this kind note. @SickKidsNews @sickkids #mucklewells #RareDisease I'd do it again tomorrow if they asked ;)

Well isn't that something. Congrats Dr. Goldman & team! #advocacy @SickKidsNews @raredisorders #mucklewells - See:

Excited to #share my #raredisease story alongside some impressive ppl #CRISPR #science #hope #beyondthediagnosis #mucklewells #raredisorder

And autoinflammatory disorders, like #CAPS #mucklewells #nomid #FCAS ! She's a real champion for our community! #canadiancapsnetwork

Let's start with #mucklewells. Can we all agree to start there?

ICYMI: . #mucklewells #raredisease @cbcwhitecoat #advocacy #Health #Healthcare #awareness #CRISPR gives me hope!

An earlier video w\ @SickKidsNews Dr. Ron Laxer about #mucklewells and my family's journey to diagnosis #raredisease

My interview for @RareGenomics about my #raredisease #mucklewells that could eventually be on their updated website.

32 years of my life summed up in a cartoon. #mucklewells

We are honoured that our story resonates with so many. Thank you @patientworthy for helping us raise awareness. @raredisorders #mucklewells