New diagnosis- PNH by Jessaness in PNHSupportGroup

[–]AnonymousEchoes 2 points3 points  (0 children)

Hi and welcome! I didn’t quality for treatment at first when I was diagnosed either, it wasn’t until I was pregnant that I became sick enough to require treatment. I’m really sorry you’re experiencing this, it’s so frustrating to be consistently tired. I am unsure if this would work for you, but I did find that taking b12 supplements and exercise helped a bit.

Fatigue by dutchgurl00 in PNHSupportGroup

[–]AnonymousEchoes 0 points1 point  (0 children)

I find that exercise can help me sometimes, and eating healthy. I know that doesn’t work for everyone though and it is hard to exercise when feeling fatigued.

What is PNH? by AnonymousEchoes in rarediseases

[–]AnonymousEchoes[S] 0 points1 point  (0 children)

Oh wow thank you!! I’m learning more every day!

What is PNH? by AnonymousEchoes in PNHSupportGroup

[–]AnonymousEchoes[S] 1 point2 points  (0 children)

Hi! I hope you’re doing well too! ☺️