Hey There!!
Welcome to Desmoids Suck!
I have made this blog for a few reasons really. Firstly to share my story and hope it helps someone, but with the added bonus of allowing myself to let everything off my chest.
To give links to any and all information I find. Not every piece I find will help everyone but hopefully most of it will.
I will post all fund raising information on here including a donation page that pays directly to the Desmoid Tumour Reseach Fund.
Most Importantly, if I have set this up correctly (fingers crossed!) You can comment and share your stories or information to, or just vent if your having a bad day.
So I have only been searching for a month now so don't know or have to much yet, so here is what I have so far.
Most Important page I have found so far is the DTRF Facebook page:
DTRF Facebook
And there main site:
DTRF Mainpage
DTRF have made a made of people they know to had/have Desmoids. Well of the people who have given permission to have there city used. The map keeps growing so it's interesting to watch change.
MAP
I Then came across Facebook groups, I will link them below under what country they are in.
UK
Multi Countries but mostly USA
Australia
Also Multi Countries
I think that is all so far but will add more as I find them and try to link them on the side of this page for easier navigating.
I will try and have my story up by next weekend but to make it easy reading will have to convert a very long story down without losing the important details out.
I hope you all had a wonderful Christmas and wish you all a happy and healthy 2015!
