II am looking to connect with other parents of pediatric SCLS patients. Our daughter is currently age 7 and receiving twice weekly SCIG infusions. She was diagnosed in May of 2023, after 5 episodes (all post Covid infection in 11/2021 - first leak was 3/2022). She leaks only during viral illnesses. She did not tolerate IVIG; although it did offer us 5 healthy months with no leaks. Her most recent leak was February 2024, when we were switching with insurance to SCIG. That little gap in treatment and an Influenza B virus caused her to leak and resulted in a hospitalization for immediate IVIG. 
 

We are sad to see Dr. Druey retire as he has been a wonderful contact for us during this time. But we are forever grateful for the research he dedicated his time to. 
 

We are treated at Duke Rheumatology.