As you know, research into Twin Anemia Polycythemia Sequence (TAPS) is an evolving part of science and the medical world. For a disease described only 15 years ago, we know more about it than ever, including things like the long term effects and international trials are working on finding the best treatment for it. Of course, as we understand more about TAPS, the diagnosis and treatments become more refined. So let’s look at the new staging system for TAPS, and talk a little about why it’s here, and also a little about the history of it.Continue reading “The New TAPS Staging System”
The team here admit to one thing – we’re so passionate about getting MCA dopplers done that we push and push and push information at you, and tell you you MUST get them done. We give you the tools to advocate and help you with wording and help bust those myths about TAPS screening. And then, all of a sudden, you get one bad MCA doppler, and everything seems so dramatic.Continue reading “One bad MCA doppler means…”
I had the privilege of being invited to the promotion and Ph.D. Defense of up-and-coming TAPS researcher, Dr. Lisanne Tollenaar this month. Here’s how the day shaped up.
One of the more interesting parts about the TAPS Support Foundation is that we get to see the other side of not only research, but we get to talk to emerging researchers and also learn the latest news on what has been discovered about TAPS. Even though it was discovered 15 years ago, and we know more than ever about it, there is still so much that we don’t know, and we continue to learn more.Continue reading “Congratulations Dr. Tollenaar: A New Era Of TAPS Research”
One of the things about TAPS that is always thrown around is how rare it is. (It’s one of the tired myths as well – why should we screen for it because it’s so rare? ) . There’s so little common understanding about it, and even in the medical field we’re met with the argument “Oh, you had TTTS?”Continue reading “Rare Isn’t Always Special”
In a change, we’re talking with one of our group members about her story. You might remember this shocking post we had on our social media, where she shared the horrifying fact she had been told lies throughout her pregnancy about MCA dopplers, and how her sons were born with TAPS.Continue reading “One Mother’s Story: Lies, Denial, and Surviving TAPS.”