My husband just got diagnosed. We are currently at Duke and hopefully will be headed home soon. Any advice would be great! Thanks! Brittany

Brittany, Welcome to our SCLS Community! There is plenty of advice in the Disorder Details, Disorder Resources, and Discussion Forum sections of this website to keep you busy for a while. If your husband's doctors are not familiar with this site, tell them to check it out. Please fill out his profile page telling us about his journey until diagnosis, his experiences before and since then, and also his treatments and other relevant information.

Warhamer, I am another SCLS patient in North Carolina. I am located in Greensboro and get treated there. If you or your husband have interest in connecting, I would be willing to get in touch. I was seen at Duke early on but the doctor there had not worked with an SCLS patient in many years, so we decided to work with a doctor here in Greensboro. I am currently on IVIG monthly with excellent results. Best to you. Marc