A post from a parent who went down the path of selective reduction.
This is not is a challenge to your story, or your choice, it’s just my story. It’s taken me 18mths to build up the courage to put my name to this.
I turned to online groups in 2020 when our darling baby B, was diagnosed with sIUGR around the 19th week of pregnancy. Our MFM and care team presented all options and of course we fought hard for both our girls. Over the next few weeks we had twice-weekly monitoring, at this point we had a 37% discordance (growing)and she was <1st%ile.
Continue reading “Selective Reduction: A Letter From A Parent.”
In January this year, Twin Anemia Polycythemia Sequence (TAPS) and 2 other diseases affecting monochorionic twins were granted an ORPHA Code and listed in the Orphanet database of rare diseases. But what does it mean that there’s an ORPHA code for TAPS?
It’s an exciting step because it means that now, TAPS is officially listed as a rare disease and will open a lot of doors in relation to research and international collaborations and make it easier to collect data for research.
But why is this important, and how will it help research? Let’s talk about it!
Continue reading “ORPHA… What?”
Where on earth do you begin when it comes to advocating for long term care for TAPS? It’s a long, tedious road at times, and sometimes even exhausting. Advocating for TAPS starts with some basics, and Stephanie shared her tips on how to get things moving.
Continue reading “Navigating Appointments: Tips For Advocating For TAPS Followups.”
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.”