...a brazen hodgepodge. ✍🎭🎙📽 Cystic Fibrosis (2)Δf508, post-tx, chronic rejection, kidney disease, CFRD All opinions are my own.
Joined July 2010
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Black children are more likely to have asthma than kids of any other race in America. They’re more likely to live near polluting plants, and in rental housing with mold and other triggers, because of racist housing laws in the nation’s past. Their asthma often is more severe
Black children are more likely to have asthma due to environmental racism—an unconscionable & unacceptable burden.
Health justice is racial, climate, & economic justice—and where hurt and harm is legislated, so too must we legislate justice and healing.
boston.com/news/health/2023/…
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Chronic illness and disabled friends:
How many of you have been directly harmed by a psychosomatic diagnosis that later turned out to be incorrect?
Like if it's never happened to you.
Retweet if it has happened to you.
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An excellent article about the many barriers to all people with cystic fibrosis having access to a CFTR modulator in the US and across the world frontiersin.org/articles/10.… – at San Francisco, CA
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Cystic fibrosis has turned into 2 different diseases. For those without modulators, this is still a devastating disease – at San Francisco, CA
Make-A-Wish Foundation says cystic fibrosis patients will no longer automatically get a wish theguardian.com/society/2023…
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In person interpreter >>> video or phone interpreter. Learn the names of parents or family members. Ask them how the hospitalization is going and act on anything to make it better. Discuss what hard things might be going on beyond the hospital walls (other children, work, bills)
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Hey @questlove! We're hosting a virtual Dance Like a Fool 24-hour dance-a-thon to raise #cysticfibrosis awareness this weekend and our DJ wants to know - can we kick it off with Whitney's "I Wanna Dance With Somebody" or do we have to build up to that? Would love your insight💽💜
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Must read thread: 👇🏻 – at San Francisco, CA
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Please read our letter about @VertexPharma's decision to drastically cut copayment assistance. Changing the copay assistance program is akin to denying access to CFTR modulators and will lead to the deterioration of health in people with @cysticfibrosis
onlinelibrary.wiley.com/shar…
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Hi.
Disabled (including immunocompromised) people don't feel left behind by your pandemic ableism.
We. Have. Been. Removed. From. Public. Life.
That's not a feeling. That's a fact.
And we have feelings about the fact.
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“People are lazy, get a job”
-Should that job earn a living wage?
“No, get better skills”
-Should that education be free?
“No, work your way thru school”
-So that job should be more than a living wage?
“No, less than a living wage”
America: where the bootstraps are unaffordable
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For patient advocates… how we understand the healthcare industry is self taught because it is survival. It’s both our greatest strength and weakness.
We’re left to piece together the nuances of the most complex industry in the country ourselves while operators build it.
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👋 hi @Scott_Wiener from one of @ucsf Pediatricians. We should talk more if you want to do something about it. Boy do I have some stories for you… – at San Francisco, CA
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SAVE THE DATES
Mark your calendars! You won’t want to miss these great events. Stay tuned for registration details.
#cysticfibrosis #DanceAThon #CFfundraiser #CFcommunity #Dance #charity #DanceLikeAFool #CFRI
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Forgot "while shouting down those of us who absolutely *have* (disabled and vulnerable folks)."
"OMG that two weeks of some businesses being closed was so hard on my mental health!"
"Right? Hey, where are our vulnerable friends?"
"I dunno, I guess they like living in fear."
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