Saturday, 5 May 2012

What's it all about anyway??

So I felt like I wanted to really put it out there, what this blog, the subsequent forum and website, and my whole thinking behind Thrombosis Support is. I feel like I have been boring you all with the DWP saga, and whilst I will go back to it (YAWN) today is about other things.


I want to create a charity/organisation/whatever you want to call it, that works primarily to support those who have been affected by Thrombosis. You may have had a DVT, PE, have PTS, or you may have been diagnosed with a Thrombophilia. You may have be one of the unlucky ones who has had a loved one taken from you due to thrombosis, or you may be someone who knows someone affected by thrombosis and want to help them, however you have been affected, I want Thrombosis Support to be able to help. 


I first had thoughts of a need to set something up when I myself was struggling to find support, and really come to terms with what had happened to me. I had gone from being a relatively healthy young woman, to someone who was either in hospital or going to clinic every week, sometimes twice a week and well who was generally quite unwell. 


As I have said before when the thrombosis hit, it was like a wave crashing over me, and everything changed.


The first thing I have set up is this blog, thrombosis support, I thank you all for reading it, re-posting, re-tweeting, following & telling others about it, please please keep doing so. I will be using this blog to share my experiences with thrombosis, and also my ideas for the future of thrombosis support, I welcome your feedback & comments. I want thrombosis support to be what people affected by thrombosis need, so do get in touch and let your voice be heard. 


The second thing is the Thrombosis Support Facebook group, search for it on facebook and get involved. 


The third thing I am working on is the Thrombosis Support forum, where people can chat with others about their experiences, gain some support from like minded people and be able to search through topics, as the issue they are having someone may have had before.


The final thing is the website- fundamentally I want the website to be able have all things support. Information about what thrombosis is, information about how to get it tested, treatment. Information about if thrombosis does happen to you what to do next, how to deal with adjusting to everyday life, where you can purchase stockings, support aids. I would like to set up support groups which can be advertised on the website, be able to offer different types of therapy, advertise fundraising events, offer advise on what benefits you may be entitled to and offer support grants if you are struggle with the financially implications of having a thrombosis.  The list goes on and I welcome any input from other suffers of what they would like Thrombosis Support to have. 


I am in the process of setting up Thrombosis Support as a non-profit organisation in order to be able to begin fundraising for it, because ultimately while I can do some of the above without funds, I need help to set this up. I know that there is a need and a want for a charity for thrombosis suffers and those affected by thrombosis, to support their life post thrombosis and make that adjustment a little easier. In the interim I have set up a donation tab on this blog where you can donate whatever you feel you can, I gratefully receive any help.


As many of us know there is one charity out there in the UK, dedicated to promoting awareness of thrombosis within the medical profession & publicly.Lifeblood


When I first came out of hospital Lifeblood, where a tremendous help, they gave me information about my condition, and showed me that I wasn't alone. Anyone who wants more information about thrombosis awareness should go to their website.


I feel like I want to give back to lifeblood and as such am doing some fundraising for them in national thrombosis week. Please check out my just giving page for all the information:


http://www.justgiving.com/johnsonkatherineelizabeth







Right I think that is quite enough for now- thankyou again for reading and please spread the word.


xx