Hi Grant, so glad you found us. There are members are on this site that are also affected with CESD. You are absolutely not alone. Please feel free to ask any questions. We have some really great resources! Mary

Hi Grant.  I was diagnosed with LAL Deficiency (CESD) in 2009.  I have since met, spoken with, and have been treated by many prominent doctors who study LAL Deficiency.  When I was first diagnosed, there was very little information about LAL Deficiency.  Lucky for those of us who have been affected by LAL Deficiency, there is a lot more information out there.  I have also found that there are many more of us affected by LAL Deficiency than I thought.  Since I have been diagnosed, I have met several people who have been diagnosed with LAL Deficiency and cooresponded with many more by email and telephone.  I have been participating in a clinical trial for LAL Deficiency which is sponsored by Synageva. I have had some pretty impressive results since participating in the trial.  There is definately hope out there for those of us affected with LAL Deficiency.  Feel free to contact me with any questions that you may have.   

Brett