Hello, sorry I took so long to reply. I am 23yrs old with SS also and live in New York City. I'm glad you joined and you are certainly welcome for the message. I am managing very well and proud to say that I don't experience painful crisis very often. I do not take nicosan, to be honest I never learned about it until joining this site, but from my research it is known to drastically reduce pain and helps many. Hopefully you can meet and discuss Niscosan with some others here who takes it. I however do take 1mg folic acid daily to assist with healthy red blood cell production. I try to eat a balanced diet to keep my energy up and stay very well hydrated to help keep the blood moving.

Enough about me... how is your daughter managing?