Hello, everyone. I couldn't tell from the Wake Forest paper posted the other day, but my guess is that the 2 cases in Wake Forest was some sort of clinical trial?? The results are amazing!
There are no TS clinics here in Japan, but there is an active advocate who happens to be a dermatologist (specializing in TS) called Dr. Mari Kaneda. According to Dr. Kaneda, topical rapamycin is not on the market yet anywhere in the world, so you can only get it through perhaps some sort of clinical trial. Dr. Kaneda is also running a small-scale topical rapamycin trial (face only) in Osaka, Japan, and I have decided to have my son (7 w/TS) participate in it.
She already had about 18 patients try it out, and so far the topical agent works very well. It doesn't interfere with other medication (oral, etc), and clears up the angios, unless they are heavily clustered and like a plaque. She said she also has hopes that it will have some effect on the white ash leaf. The only thing is that this trial is only 3 months long, so we only get to use the topical rapamycin for the limited 3 month period and not afterwards. (unless there's another trial set up that we can participate in) She mentioned the angios do come back in about 1 month once you stop the topical agent, but wouldn't this be so much better than laser??
I wonder what we can all do to make this topical agent become available in the near future.