Anyone dealing with Paroxysmal nocturnal hemoglobinuria (PNH)?

Hello @jag11, Welcome to Connect. Sorry to see that you haven't had any responses yet. There have been a few members who have mentioned having PNH in other discussions. here is a link if you want to scan through their comments - https://connect.mayoclinic.org/search/comments/?search=PNH. I did find a site that has a lot of information on the condition that might be helpful if you haven't already seen it.

-- Understanding PNH - PNH Signs And Symptoms: https://www.moretopnh.com/burden-of-pnh
The above site also lists 2 additional resources:
-- PNH Global Alliance: https://pnhglobalalliance.org/
-- Aplastic Anemia and MDS International Foundation: https://www.aamds.org/

Have you thought about seeking help at a teaching hospital or major health facility such as Mayo Clinic?