Paroxysmal Nocturnal Hemoglobinuria

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Paroxysmal Nocturnal Hemoglobinuria
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    Oh, really? You don’t look sick

    This is the first time I’m hearing people say just how I’m also feeling. Aplastic Anemia/PNH is not an illness that shows on my face, so when the other hockey moms want me to drive the kids to practice as a single mom more than they drive as married moms, it’s hard to be understood. The fatigue at times would scare me when I drove the crew in the evening. As a single mom of three 28,20,20 yrs old, I’m not sure how I did it all but I did.
    Faith , love for my kids and hope . Not all at the same time but always a little of at least one of these feelings got me through each day. I did not think I would live to see my children grow but here I am, 20 years later. Now what ? Lol that’s the question. This is a whole new ballgame and not sure how to find my place in this new chapter yet.
    #RareAndMighty

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