Ilana Jacqueline: National Appearance on Lifetime TV for World Rare Disease Day!

You read the tweets and tried to hide the multiple Facebook statuses–but it happened anyways! I appeared this morning on the first full half hour special of Behind the Mystery: Rare and Genetic on Lifetime TV’s “The Balancing Act.” Super kudos to Carri Levy for creating and producing this show along with the rest of the talented team at 02 Media. Nicole and I were there as representatives of The Global Genes Project.


I hope my friends in the POTS communities won’t be upset that there wasn’t a mention of my diagnosis beyond PIDD! Between editing and our limited time on screen it just didn’t make the cut. Not to worry though, POTS is an issue I’m still advocating for–along with many other (of the full 7,000) known rare diseases! So stay tuned for further appearances! I’ll do my best to get as much support as possible for all rare communities large and small!

To catch the show again, tune in next Friday for World Rare Disease Day same time, same channel.