We would like to thank the Cowan family for sharing Emily and Aimee’s TAPS story. To find out how you can help support the family, please click this link, or scroll to the bottom of the page.
2020 was a big year. Covid came and took over all our lives. And it is in these Covid times that Emily and Aimee’s TAPS story began.
After blood tests and double-checking, I had to tell my husband that I am pregnant again at 43. We already have two teenagers at this stage of 11 and 13. There was no laughter and cheering, just three weeks of tears. After I went to the doctor for the first time, another two weeks of tears because we found out it was twins – MODI twins.
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!
After coming out of NICU with my twin girls in one piece but my mental health in tatters, I looked forward to a life for my twins with tentative positivity. I hoped that the white knuckle ride of multiple pregnancy was behind me. I avoided all the twin and multiples groups I had joined because, in all honesty, I was afraid of what I would read and the trauma it would bring up in me.
This is my story of how advocating for a different diagnosis helped me to heal.
Did you catch Stephanie talking with Natalie Diaz about TAPS on Twiniversity earlier this month? They sat down to talk all things TAPS, and help bust some myths, as well as talk about the important stuff you need to know.
Watch the full interview here: Learn About TAPS With Twiniversity.
Want more information about TAPS, or want to connect with a community of families who have been there? Join our Facebook group, or get in touch.
TAPS causes so much frustration. This blog is about living with this fact.
I’ve talked about our story so many times, and I’m pretty sure most of you can recite it by heart. Born at 31 weeks with Twin Anemia Polycythemia Sequence (TAPS) in 2013, one of the best ways to raise awareness is to talk about our story on repeat. It’s guaranteed you’ll either get annoyed by me or want to join my campaign ;).