I'm on an immunosuppressant. After a quick cost/benefit analysis I decided to get a Covid booster this year. Three days later I was hospitalized from a #PNH flare and #AKI.
I'd do it again in a heartbeat. Zero regrets.
#Empaveli #paroxysmalnocturnalhemoglobinuria #chronicillness #disability #covid
FYI: LucidQuest Views >>> Rare Diseases Weekly News – June 12th 2025 #News #RareKidneyDisease #Empaveli #Mavorixafor Comment below!
ICYMI: LucidQuest Views >>> Rare Diseases Weekly News – June 12th 2025 #News #RareKidneyDisease #Empaveli #Mavorixafor Comment below!
LucidQuest Views >>> Rare Diseases Weekly News – June 12th 2025 #News #RareKidneyDisease #Empaveli #Mavorixafor Comment below!
I love that my disabled ass is going to be paying 10% in taxes. Because I've already got nothing to give, might as well take $1,000 more.
Plus if you take away Medicaid coverage, I'll have to scrounge up an extra HALF MILLION DOLLARS in order to cover #Empaveli, nbd.
#medicareforall #fdt
This is personal to me. I have #ParoxysmalNocturnalHemoglobinuria, a rare autoimmune blood disorder. The medication I need to survive this condition, #Empaveli, is $40,000 per MONTH. That's not even including my #insulin.
Without #Medicaid, I will bleed to death. From inside my own veins.
Niche #pnh #raredisease post, but why did my hematologist's office have to call me RIGHT after I finished my #empaveli infusion?
I need my post-infusion nap before I can even consider getting dressed, let alone going in for whatever stat blood work he wants done..?
#chronicillness #disability #fml
Mine's selfish. Before the #ACA I lived out of my car because I could afford rent or I could afford insulin while my type 1 diabetes was a "pre existing condition." Now I am on a med for PNH, #Empaveli, that costs $40k/month. Corporate greed can & would kill me.
#empathy #thanksObama #fdt #radical
The Rising Market Potential of EMPAVELI and Its Impact on Complement Inhibitor Therapies #USA #Las_Vegas #PNH #Apellis #EMPAVELI
