I've had PNH for about 30 years... The treatments now are so good that I can now lead a normal life!!...❤❤❤

I recently just found out I have PNH , i really do feel the same , I've been back and forth to and from the hospital. I just wish everything would be over with already 😞 just pray for me everyone, Love Sara from Pennsylvania ❤️

All the very best to you Sarah! Hope you are doing okay!

PNH- due to somatic mutations of PIGA gene-req for synthesis of GPI-AP which anchors CD 55(DAF),CD59(MIRL) m.imp,C8 binding protein. m.c leading cause of death is thrombosis of hepatic veins characteristic triad-hemolytic anemia,pancytopenia,thrombosis screening tests-ham's test,sucrose lysis test confirmatory test- flow cytometry only cure -BMT

I am close to someone who has this condition, and it is truly difficult, especially when others around really do not understand I do not understand the exhaustion and the fatigue and that the person really just cannot do much

My mom has it for about 13 years now. It took like 4 years to find out. She is getting transfusions and feels quite good now. Hopefully it gets diagnosed faster in the futurer. (my English isn't the best, I'm from Germany😅)

I have PNH and soon imma get a transfusion xP

My mom has this