The one about the TAPS support group

It’s a quick update, I know.  I’m actually trying to be good and stick to my scheduled blogging times (for now), and I’ve been doing sort of well with it.  I’ve done a bit of tweaking, I now have my own domain and am slowly working now towards upgrading and building a bit more stuff around the site.  I mean, I NEVER expect to take off and all that, but hey, when your google rankings are not bad, you take advantage of that and make things look pretty.

One thing I’ve been itching to do for ages is set up a Facebook support group – and it finally happened! I’ve got some great support from some friends I’ve met in TTTS and TAPS circles, and these awesome ladies are helping out with the setup and all that – you’ll find us here at this link. Twin Anaemia Polycythemia Sequence (TAPS) Support – https://www.facebook.com/groups/tapssupport/

One of my goals in my advocacy campaigns has always been to get a support network started.  I look at how my journey started almost 5 years ago, and I’ll be honest, I don’t think I ever felt lonelier in my life.  I’ve talked about being away from my family and in a country where I wasn’t confident in the language, and for me, this was a very dark time in my life.  I now know I’m not alone, and I want to make sure noone else ever feels that way again.

So why start a new support group?

Well, it’s like this. There is nothing wrong with all the existing advocacy groups, twin groups and TTTS support groups.  I belong to many, and I plan to stay an active member of them all – because they mean so much to me.  After I found them a couple of years after the girls were born, they were incredible support and I’m so grateful for them.

What does happen is that TAPS parents do tend to be lost under the folder of TTTS.  It’s incredibly natural for this to happen – it is a form of TTTS.  But our treatments are different, our options are different, and our outcomes can be different.  There is also a lack of information out there at the moment, so having a seperate, TAPS dedicated group means we have a place where people can come and talk about their diagnosis with other people who had the same diagnosis.  This group is aimed at giving TAPS patients a firm foundation to talk about their diagnosis with their peers.

If you’ve found this post by google – welcome to my blog.  Stick around for more random ramblings.  If you’re looking for resources, check out my important links section.  If you’re interested in joining the group mentioned here – click the link above :).  You don’t have to feel alone in your diagnosis 🙂