autoimmune patient advocate + founder @telltalehealth ~ unstoppable force ~ interested in many things!
sf
Joined June 2023
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how long have you been on?
i seem to be a hyper-responder to tnfi's but i also am very prone to developing anti-drug antibodies (failed humira and enbrel when misdiagnosed). the solution for me was receiving infusions with drug trough monitoring rather than injections!
i'm on the og, Remicade! i have Crohn's associated inflammatory arthritis as well (which is why i was misdiagnosed)
my mission is to speed up the care loop that gets patients into remission, and then build out the missing extended care team that helps patients thrive. we need continuous monitoring, coordination, and execution.
if you're a patient going through it, i'd love to talk <3
as more and more treatments become available, it becomes pertinent that we quickly and effectively identify treatments that will work for a given person's autoimmune disease, and then effectively coordinate that care.
anything less is a failure to patients.
also! big news, i leaned last week that my Crohn's is in remission :') my gastro was shocked by how good my results were
it took me almost 2 years to go from incorrect autoimmune dx -> Crohn's dx -> medication that works. tbh i started thinking i'd never get out of it.
it's a crime that we let people feel like shit for years living with undiagnosed conditions that have treatments. and then even post-diagnosis finding the correct treatment. i had to try 5 biologics, 3 NSAIDs, and a DMARD before finding the drug i could be stable on for longer than 2 months.
yeah :( i recently found a chronic illness influencer who has a decent audience who's actually starting something like this at her new gig, i signed up to be a founding member so we'll see 🤞
it's focussed on people who are juggling a bunch of things on top of chronic illness
:')
a good partner takes away the need to impress anyone, and that frees you to go chase the stuff youd normally be too embarrassed to try. no more cringe tax. the doubt and anxiety go away and you get unrelenting support from someone you care about. creative stuff, business, what you wear, any dying dream. who cares whos checking you out (or judging you) when you already have your person. who cares what your friends think when you have someone who will ride with you to the end of the earth. you stop caring what anyone thinks. except them. and if theyre the right one, theyll be there for you no matter what. infinite confidence glitch.
yes!! exactly
it's a bit of a struggle bc at points i did want more community to like commiserate with but now that i'm out of the weeds i'm like damn i wish there had been more stories of people coming out of it and doing well