Ein kamp der til og med GRATIS medisin som eit legemiddel firma vil gje, står forsatt på vent fordi #PNH er blitt politikk hos fagdirektører..

https://www.nrk.no/trondelag/trym-saugstad-karlsen-_25_-far-ikke-behandling-for-den-sjeldne-blodsykdommen-pnh_-_-dypt-problematisk-1.16426723

@attacnorge Litt surt å tenka på som #PNH pasient, som det berre er nokre få nye tillfelle av i norge pr år blir nekta livsviktig medesin pga pris..
Og her renn kr ut.

(Also: we didn't really know much about #PNH - paroxysmal nocturnal haemoglobinuria - nor how it related to our son's #AplasticAnemia. But it's a disease, that often coincides with #AplasticAnemia, which causes the membrane of red blood cells to fail, and then the heamoglobin"falls out" into the blood stream - called #haemolysis. This website was really useful: https://my-pnh.com/pnh-resources )

So, it seems like yesterday's unwellness might simply have been an episodic #PNH (paroxysmal nocturnal haemoglobinuria) event - just one of those things that happens.
Son was preparing to come "home", but because his #RBC (red blood cell) count was now below 75, he was given a transfusion.
*Unfortunately* he's had a reaction to that transfusion... 😱