Contact with the Tuberous Sclerosis Alliance

Contacted the Tuberous Sclerosis Alliance this week seeking a TSC expert in San Diego to be on my medical team. Received a call yesterday from Dr. Stephen Ashwal, Director of the TSC Clinic at Loma Linda Medical Center, who is willing to offer support to both Dr. Zu and me regarding Tuberous Sclerosis issues related to my medical condition. Dr. Ashwal will set up a time for me to be seen in the Loma Linda Clinic and will discuss my case with Dr. Zu. He is the closest expert in Southern California. I feel as though this is the last piece of my support network that needed to be put into place. Currently, the Loma Linda Clinic sees about 10 adults with TSC.

Ironically, Dr. Ashwal knows both of my previous pediatric neurologists, Dr. Ira Lott, now at the UC Irvine Medical Center, who first evaluated and diagnosed me with Tuberous Sclerosis back in 1979 at the Massachusetts General Hospital, and Dr. Margaret Baumann, who is still affiliated with MGH.