Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: stacey_lou on November 24, 2008, 02:51:19 PM

Title: hey everyone....I'm new here...and a lil nervous =]
Post by: stacey_lou on November 24, 2008, 02:51:19 PM
well a big hello to everyone here...oh my gosh, I'm quite nervous writing this now  :rolleyes
well I just wanted to introduce myself really...I'm Stacey, I'm 19 years old and I'm from England. I have Thalassaemia Major, and I have been wanting to join a site like this for quite a while now, a site where you can relate to others by sharing experiences, any worries or concerns and just generally offering support to others.  :yes I have never met or spoken to anyone that is in the same boat as me, so I'm really glad I have found this amazing site.
looking forward to hearing from any of you soon, best wishes!


~x~
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Manal on November 24, 2008, 03:30:57 PM
Hello Stacy and a big welcome to the site.  :welcomewagon :welcomewagon We are happy to have you here, please feel free to ask whatever you want. We will be always here for you sharing our expierences togather. Welcome  :hi5girls

manal
 :urwelcome
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Zaini on November 24, 2008, 04:49:16 PM
Hello Stacey,

Glad to have you here,keep posting ad sharig more and more.

Zaini.
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: nice friend on November 24, 2008, 10:10:29 PM
Hi Stacey Lou ,
:welcomewagon :welcomewagon :welcomewagon :welcomewagon
:welcome Welcome Stacey Lou  !!! :welcome
:welcomewagon :welcomewagon :welcomewagon :welcomewagon
:welcome to the Family ,  please start posting message , dont hesitate to ask wat you want to know , and also dont hesitate to share  wat you wana share with us ... please stay in-touch with us ... and share your experience abt Thalassemia with us .. i hope you will find this forum very helping ...

Best Regards
Take Care
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Sharmin on November 25, 2008, 12:38:53 AM
Stacey-Lou,

Welcome to the site - we are very happy to have you here and to learn more about you!!!!

We welcome you to share and learn with us!!!

 :welcome :welcome :welcome :welcome :welcome :welcome


Sharmin
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: jatinder on November 26, 2008, 10:36:16 AM
a huge welcome  stacy,

glad to join us here well dont shy to ask any help we will be with you

rgrds and blessings with help
jatinder kewlani
:welcomewagon :urwelcome :welcome :welcomewagon
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Dori on November 26, 2008, 11:22:31 AM
Hey Stacey_Lou,

maybe ou should contact this organisation www.ukts.org
I'm sure you will find some people in the UK with this disease.
I hope you will like it here! Where do you live? I have been in Newcastle. :)
Best wishes, Dore
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Laura on November 26, 2008, 07:24:17 PM
Welcome to "the family"!!!!!!!!!!!!!

I'm also curious about where are you from. I'm visiting London next week. Maybe we could have a coffee if you live near London.

Kisses,

laura.
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Lyanne on November 27, 2008, 07:33:17 AM



 Helllo ! and welcome Stacy_lou!........  :hugfriend. Don't be nervous just share your problems and concerns and we are always here to help you understand more.......
Title: Thank you all so much...
Post by: stacey_lou on November 28, 2008, 04:29:46 PM
I am truely thankful to Manal, Zaini, Nice Friend, Sharmin, Jatinder, Peartree Girl, Laura and Lyanne for your kind words and the big welcome you have all giving me, so thank you.  :biggrin

Some of you have been curious as to where abouts I live in England and I'm afraid its not near London, otherwise I would have loved to meet up with you Laura and had a chat and a coffee. I live in Somerset, South-West of England.

so I guess I should take this time and tell you a little about me and my condition...well I first got diagnosed with Thal 15 years ago when I was 4 years old. My parents took me to the Doctors one day with a bad cold but when the Doctor checked me over he was more concerned about my swollen tummy. I had lots of tests which then revealed I had Thal Major. My family were completely shocked, they hadn't ever heard of Thal before and they had no idea what to expect or what it meant for my future. I had my spleen removed and from then on my life had changed dramatically.
Looking back now I can see it wasn't always easy as much as my family tried to make it, there were some real terrifying times but its hard to remember them all now as I have come so far from the scared and lost little girl that I used to be. My parents always treated me like any other 'normal' child as best they could, and I loved being like that and being able to blend in with all of my friends, and not being the odd one out. Obviously I didn't understand alot about Thal back then so I did find it difficult when I had to keep going to Hospital for blood transfusions and when I had to have my pump on at night...but I got used to it, you just carry on through the rough times until you come out the other side...which you do, and you come out alot stronger as a person and as a family. There was a time not long ago, when I thought I would be on Desferal for the rest of my life...and now I'm off this for the moment and on Exjade. Things can and do get better, and they will for you all. There were times when I thought things couldn't get much worse, real low times but you do get through them and if anyone wants to talk about things, then I am here to listen.
As I am now older I now understand that havingThal isn't the end of the world...infact I am happy with who I am and proud to be one of many who have this too. I believe its not what you have in this world that makes the difference...its how you deal with it that counts.
I still have my days where I feel down and I think that everyone can relate to feeling like this, but I just want everyone to know that you're not by yourself...whether its family, friends or this very site....we all share something in common...a life with thal and together all as one, we're all find the strength and the answers for a happy future.
Take care and best wishes to you all.
~x~
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Dori on November 29, 2008, 03:38:32 PM
Stacey_lou,

You are around the 21 year? Me too  :wink
(I don't have thal, but the rare anemia pyruvate kinase deficiency)
Take care! I got (the small) flu at the moment with a very low hgb) It's only 1,5 week ago. Wednesday I will have an other one...
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: sydneygirl on November 30, 2008, 10:01:37 AM
Hi stacey,
welcome to the site & its great to meet you! Im from sydney Australia but i have lived in the uk before as both my parents grew up there,i too have thal major,its great to know there are others out there in the same boat.I went to in London the UCH hospiatal which was great.
Look forward to your postings :)
Title: In response to Peartree Girl & Sydneygirl...
Post by: stacey_lou on December 08, 2008, 01:45:09 PM
Peartree Girl - I'm sorry to hear that you have been unwell recently...I hope that you do feel better very soon, please take care of yourself.   :smiley what is your current haemoglobin level?

Sydneygirl - Its very nice to meet you too. I have family members who live in Australia. I'm looking forward to hearing more about you...How do you find living with Thal...? What sort of treatment are you currently on for your iron? Take Care   :smiley



~x~
Title: Re: hey everyone....I'm new here...and a lil nervous =]
Post by: Dori on December 09, 2008, 11:04:35 AM
Thank you.
I stay ill because of the lack of time for all the things I have to do for study. I don't like it, because it feels like i am running behind myself. At the other side, if I do everything before the holidays I can concentrate on the upcoming exams.
I'm on Exjade, you?