A couple days ago we were contacted about being on a panel to talk to 1st year medical students at Georgetown Medical School about Tuberous Sclerosis. The person who was supposed to speak couldn't make it and our names came up. The only hitch was that it was the next day so we had to move quickly to get a speech together. Rob went and gave a 20 minute speech about TSC and our family's experience.
It was such an honor to have been asked and I'm so proud of Rob for doing the speech. I was bummed that I couldn't have been there too to cheer him on though. Rob was one of a handful of people talking about various genetic disorders and it's interesting that when you are dealing with a rare disorder, a parent or patient who has chosen to educate themselves about it knows more than the average general practitioner. I'm not saying this out of conceit, it's just what we've experienced. I am in no means criticizing doctors, I'm sure TSC is briefly discussed in medical school, but what is the likelihood of ever encountering it if you aren't specializing in an area that deals with it. There are about 50,000 cases in the US, but that's still a pretty small percentage.
Being part of a discussion panel of this nature is huge because TSC is a rare disease and every mention of it helps raise awareness in some niche of life. TSC has been mentioned on a few medical TV shows and every now and then a newspaper will do an article about a child with TSC who has brain surgery, but it is still virtually unknown. One day when I say that Evan has Tuberous Sclerosis I won't be met with a puzzled look, and that's when I'll know real progress is being made in terms of awareness -- and I know that day will come.