[Susan]

Hi Jen, How are you?! How did your Dr appt go? Many people with PNH are or were on Social Security disability. Some went on company disability first. Later some were able to return to work once on Soliris but not all of them.

I used to go to AAMDS patient & family conferences and the support break out sessions. It was always said to ask family and friends for help. have someone do shopping some errands, babysit and so on sometimes so you can sleep, rest!

How about ordering some AAMDSIF info packets on PNH ( and Aplastic Anemia because they are related and both exhausting). Give them to family, good friends. They can watch AAMDSIF educational webinars about fatigue and coping - how serious it is.

I remember sometimes when I was working I was so weak I had to hold on to the walls for support when I walked out the door! I had no business working but needed the income. My Hgn was just a tiny bit too high for a transfusion. I should have insisted.