Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: anae on November 11, 2007, 03:08:26 PM

Title: new kid on the block ;)
Post by: anae on November 11, 2007, 03:08:26 PM

Hello all,

I am Jackie I am Dutch and live in the Netherlands. I am born with a rare bonemarrow disorder named congenital aplastic anaemia.This disorder it is very much related to Diamond Blackfan Anemia and Thalassemia major. I am transfusion dependend since my day of birth. Which is 28 june 1963.  Every 5-6 weeks I download some red cells : ) mostly 2 or 3 packed cells. Since February 2006 I get my transfusion at home. Very luxurary.
I used to use Desferal since 1967, but at the moment I don't use any chelation therapy at all. This is my own choice and I am fully aware of the consequences.


if you want to find out more about me, feel free to ask me. I hope that I may join this group even if I am not a thala like you.

My website is in the Dutch language and I do have an English weblog (alhough my English is a kind of rusty  :rotfl

http://twocatsdesign2.wordpress.com/ (http://twocatsdesign2.wordpress.com/) you may also use http://twocatsdesign.wordpress.com/ (http://twocatsdesign.wordpress.com/)

or my website:

www.bloedziekten.nl (http://www.bloedziekten.nl)
www.diamondblackfan-anaemia.c0m.nl (http://www.diamondblackfan-anaemia.c0m.nl)


greetings Anae

Title: Re: new kid on the block ;)
Post by: sydneygirl on November 12, 2007, 10:34:02 AM

Hi Jackie,
welcome to the website! may i ask a personal question i noticed you posted you dont
take Desferal anymore may i ask why?
Its great you have joined and the people are great on here.
 :hugfriend

Title: Re: new kid on the block ;)
Post by: Lyanne on November 12, 2007, 11:20:17 AM

   Hi jackie,
      Welcome! hope you find this website educational and helpful even if you are not a thal patient.... yeah like sydneygirl  i 'm curious why haven't you continued your chelating theraphy???are you taking a different chelator?

Title: Re: new kid on the block ;)
Post by: KHALIFA on November 12, 2007, 09:32:41 PM

   :hmm  yeh am  a gree with Lyanne and sydneygir  ... and you welcome here in this site
                                  khalifa
                            state of kuwait
                      one for all and all for one

Title: Re: new kid on the block ;)
Post by: maryo0m on November 23, 2007, 06:59:44 PM

Hello and welcome :)

I'm really sad to hear that ur not using any treatments :( u should always be positive any continue to take good care of your self... your body is a gift from god that you should treat well and these days thalassemia treatments are developing and if you dont want needles you can take tabletes (exjade) so plllllllllllllllllllllllllllllllllllz try to treat your iron :)

wish u good luck and u have my support :)