Just doing some digging. #Pain is extremely nuanced. And the approach should also. W my kids #health & #pain there has been continued lack of knowledge, assumptions, & unwillingness to understand.
➡️#Anatomy of those that had #TPAIT & lack of understanding
by many docs 1
how this can impact #pain
➡️ Not identify or understanding impact of #MalabsorptionSyndrome
➡️Assumption that removal of #pancreas should immediately ‘solve’ issue of #ChronicPain
➡️ #GastricEmptying issues
➡️ Age of my kids (too young to have #pain)
➡️ Lack of 2
understanding & identification of #MedicalTrauma
➡️T3c #Diabetes
➡️ Impact of #NASH on #pain & options for #care
There are numerous factors that are critical in #Treating an #ChronicPain in #Individuals. They list of few listed above that are factors w my kids, have often 3
been not taken into account & thus care often has not been appropriate & many times it’s been extremely #harmful.
How do #carepartners & #patients #advocate? Our family had encountered issues for years & even though we attempt to point out following mostly dismissed. So many 4
factors involved when you have #RareDisease #ChronicPain #neisvoid #DisabilityTwitter a piecemeal approach actually is a incredible #Risk for us, YET minimal physicians (some studies are demonstrating) are not interested in caring for us. The #HealthcareInAmerica model is NOT 5
conducive to accessing the care we need & #Deserve.
We are #problematic
We are #timeconsuming
We are not a #moneymaker
We often have #medicaltrauma due to the exact system we are supposed to turn to for assistance
Are knowledge #dismissed & not #valued
6
we are viewed often as #criminals blamed for our #diseases
Our #diseases come w #grief & #pain
Yet it is the system that demoralizes & #shames us.
Our #voices so easily #silenced by #gaslighting by #medicalprofessionals, while others, turn away & remain #Silent.
7
#WeDoMatter AND we deserve a system that WILL meet our needs. We #Deserve out #voice and #Agency.
The #Irony of it all is IF our #Voices were #Valued, & system met our #needs; costs would lower & our outcomes would be better.
We deserve SO much better
#mosquito 8
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