TAPS Support - The Latest News, Stories And Interviews

September 7, 2023November 2, 2023

The CONTRAST Study: Understanding SFGR

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In a new series of articles, we’re learning about the different research studies that are out there, making a change in the world of twins. In this article, we invited Anne Noll, PhD student to tell us more about the CONTRAST Study and selective fetal growth restriction.

About the CONTRAST study:

The CONTRAST study is a prospective multicentre international cohort study on monochorionic twins with sFGR.

Selective fetal growth restriction (sFGR) in monochorionic twins may negatively impact the pregnancy. There is a substantial risk of fetal deterioration resulting in (iatrogenic) preterm birth or even intrauterine demise of one, or both fetuses. There are important unresolved challenges on a diagnostic level and underlying pathophysiological mechanisms of sFGR have not been fully clarified.

May 5, 2022May 30, 2022

Twin Pregnancy and Mental Health

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Depression, anxiety, and PTSD (post-traumatic stress disorder) are the three most common mental health conditions experienced in the ‘perinatal period’ (during pregnancy and after birth), with around 10-20% of people who give birth experiencing one of these conditions.

May 3, 2022May 17, 2022

Selective Reduction: A Letter From A Parent.

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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.

February 28, 2022February 28, 2022

ORPHA… What?

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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!

April 10, 2021April 10, 2021

A letter to Autumn.

A year has passed since we said goodbye, and so much has happened. I wanted to write to you today to tell you more about your story, and why we are passionate about Autumn’s Legacy

You are loved and will always be loved.

We miss you every day, and your sisters are sweet and spirited little girls. When I look at Leighton, I know I also see you with her.