Hi Ron - i'm going to send you a private message on this page here. My daughter has sclerosing mesenteritis as well and diagnosed at age 14 and has 17 abdominal surgeries now with another one about to happen next month for multiple bowel obstructions and has also been on TPN off/on since 2008 and full time the last 2.5 years. We've been in Cleveland now for testing and evaluation for a bowel transplant to hopefully cure her of SM. We are in Tulsa, Oklahoma. We have an ever growing group with 207 members in it with people all over the US and several also from other countries all with SM or MP. We have a handful there in Florida that i'd love to put you in touch with. We have a good handful in our group with severe SM/MP and other are mild and some are in between and we've lost 3 in the past year with SM after their diagnosis. 🙂 My name is Lisa Schwartz in Tulsa, OK