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Tag: advocacy

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A TAPS Story From South Africa: Emily and Aimee

TAPS-Story-from-South-Africa_-Emily-and-Aimee-twin-anemia-polycythemia-sequence-twins-support

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.

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Selective Reduction: A Letter From A Parent.

selective reduction taps twins twin anemia polycythemia sequence twins support

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.

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ORPHA… What?

twin anemia polycythemia sequence taps orpha code twins foundation stichting awareness rare disease

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!

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Kitty & Willow: How A Diagnosis Changes Everything.

kitty and willow

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.

Continue reading “Kitty & Willow: How A Diagnosis Changes Everything.”