Hey Friends.............How R U There???

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Offline Danielle

  • Beta Thal Major
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Re: Hey Friends.............How R U There???
« Reply #30 on: February 15, 2006, 03:35:07 PM »
I think she'd also be delighted to know that Danielle has worked so hard to continue Lisa's work.

Yeah, because I'm the only one who had anything to do with putting this site up, right?  WHAT ABOUT YOU?!   :rotfl

Silly boy.   :biggrin

Andy, you have done so much over the last 2 years.  Lisa would be so proud to know what you have done for her and all the members.  Thank you for doing so much for us!   :hug

It has been my pleasure to help you and Lisa, and all of our members.   :happyyes

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Offline metaliksal

  • Thal Major + Biochem. Grad Student
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Re: Hey Friends.............How R U There???
« Reply #31 on: February 16, 2006, 03:58:42 AM »
Hello everyone, Im Salmaan, Beta Thal Major from India, now living in the US. Thal pateints and friends has been a great resource for me over the past few years. Its comforting to know other ppl are out there going through the same things as you are.
Im glad to see the new and improved website, looks excelent! Good job Andy and Danielle !!

Take care all.

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Offline Andy Battaglia

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Re: Hey Friends.............How R U There???
« Reply #32 on: February 16, 2006, 04:35:20 AM »
Hi Sal,,

Glad to see you here. Are you going to the Vegas conference in May?  Keep us posted on your exjade trial. Would Novartis being willing to sponsor you going to the conference?
Andy

All we are saying is give thals a chance.

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Offline metaliksal

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Re: Hey Friends.............How R U There???
« Reply #33 on: February 17, 2006, 01:33:26 PM »
A trip to Vegas to meet fellow thals would be great! But I cant get any time off work in May.
It would be great if ppl who attend can update the rest of us with info from the conference.
Sal

Re: Hey Friends.............How R U There???
« Reply #34 on: February 20, 2006, 06:25:54 AM »
Hello Kathy,

My name is Bella and I am from Queensland Australia. I have three children, the two eldest were diagnosed with sickle cell beta thalassaemia 11 years ago and the youngest diagnosed as a carrier of sickle cell at birth. How long have you been living in Western Australia?

My children live happy somewhat normal lives, they have blood transfusions every 4 weeks and oral  iron chelation everyday. I always remind them that there blood disorder is only a part of who they are and not Who they are. We are totally honest with them about their blood disorder. We include them in discussions and decision making about their body with their doctor, yes there are some restrictions with their condition and sometimes they can be unhappy with the choices available to them, but we work together to get the best possible solution.

Our son presents more like a sickle cell patient where he does get sickling crisis. They are very painful episodes that requires hopitalisation. Actually we just got out of hospital Wednesday. He experiences intense pain and only doses of morphine or phentoyl and hyper infusion of saline can help , however it only helps a little. We are always vigilant and make sure he is not in extremes of temperatures and do the best we can in making sure he is hydrated.

Kathy please if you would like to chat or talk to someone that knows very well what u are going thru please contact me via email. I will be able to give you the contact details of the group in western australia. They would be able to help you in your quest in finding a haemotolgist that is well aware of your condition and would be able to help and understand you.

warmly,

Bella,
Brisbane, Australia


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hello everyone,
I'm a 51yrs old who was diagnose with thalassemia minor(traits)and sickles cell,
that happened two yrs ago, when, I was getting lots of problems with my health,
I had severe depression. high blood pressure, high cholestrol and lots of body aches and pain.
I already suffered a minor heart attack lucky i went to hospital on time and was given oxigen and aspirin .I cann't cope with  stressfull situations, heat or severe cold weather.
Still iI feel that i'm not getting the proper treatment I need ,as there has not been any research and no one is dealing with thalassemia,  here in perth west australia.My doctor told me  that they cann't change my biological make up.
So here I am suffering in silence and waiting for my death ,I 'm gratefull that I could  be part of this website thank you for having me.


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kathy10

Re: Hey Friends.............How R U There???
« Reply #35 on: February 21, 2006, 03:43:57 AM »
hi Andy thank-you amd thank-you to Bella I have already e-mail her and I'm hoping to hear from her soon. thank-you all.

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Offline Danielle

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Re: Hey Friends.............How R U There???
« Reply #36 on: February 22, 2006, 06:23:03 AM »
Hello everyone, Im Salmaan, Beta Thal Major from India, now living in the US. Thal pateints and friends has been a great resource for me over the past few years. Its comforting to know other ppl are out there going through the same things as you are. Im glad to see the new and improved website, looks excelent! Good job Andy and Danielle !! Take care all.

Thanks, Sal.  It's good to see you here.   :biggrin

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Offline Rudeboy

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Re: Hey Friends.............How R U There???
« Reply #37 on: February 27, 2006, 03:36:15 AM »

Hello all,
I'm a noob, but like many others here I was diagnosed at age two with beta thal major.  Graduating in the spring with my B.A., and that's all I've got for now.

Peace,
Jay

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kathy10

Re: Hey Friends.............How R U There???
« Reply #38 on: March 02, 2006, 08:33:48 AM »
Hi andy.
I have some good news ,I manage to get an appointment with a heamatologist here in perth.
I think that I'm finally going to get the proper medical care that I require .
I owe my gratitude to this web- site and its members especially Andy and Bella, you have been very helpfull.
I will keep you all informed  of my progress.
thank-you very-much.

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Offline Danielle

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Re: Hey Friends.............How R U There???
« Reply #39 on: March 02, 2006, 08:43:18 AM »
I'm so happy to hear this, Kathy!   :yahoo

You definitely deserve proper medical care, and I hope that you get it with this new doctor.  :biggrin

Let us know what happens.  :hug

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kathy10

Re: Hey Friends.............How R U There???
« Reply #40 on: March 02, 2006, 03:52:53 PM »
Hi Danielle.
I just read your posting in response to mine, regardings those careless doctors,
Thank-you for the encouragement ,I'm so glad you are all there and you make it so easily for me  to reach out for help.It means a lot to me and I appreciate it.Thank-you again.
kathy

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Offline Andy Battaglia

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Re: Hey Friends.............How R U There???
« Reply #41 on: March 02, 2006, 03:59:53 PM »
Kathy,
That's great news! Please do let us know what you find out about your condition and if any treatment is recommended.
 
I'm glad we can be of help.  :smile
Andy

All we are saying is give thals a chance.

Re: Hey Friends.............How R U There???
« Reply #42 on: March 07, 2006, 06:55:59 PM »
Hi Friends,

This is really a wonderful site.
Our daughter 3 Yrs Old is a Thal major, getting treated at The Sultan Qaboos University Hospital in Muscat, Oman.

Its builds lot of confidence when I read that thal major patients have led a very normal life and achived the best progress in their
professional life.

Our Daughter receives transfutions every 4 weeks. 5 days a week she gets Desferal & 2 capsules of Kelfer every day.

Awarenes of this genetic disorder is very low.Hope major corporates & other public organisations take this up.
People really need to know about this disorder.
I have spoken to couple of friends, trying to educate about thalassemia. But people say -- No this cant happen to me. This has to change.

Anyway, all the best to all of you

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Offline Ambika

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Re: Hey Friends.............How R U There???
« Reply #43 on: September 27, 2007, 09:25:45 AM »
Hey friends

My daughter I have two daughters the Youngest one is thalessemia major she is  7 months old . she receives blood transfusion evry month . from this month only i have started giving her wheat grass juice lets see If it help her . Iwant to know if anybody knows any permamnent cure for this disease

with regards
Rupali

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Offline §ãJ¡Ð ساجد

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Re: Hey Friends.............How R U There???
« Reply #44 on: September 27, 2007, 09:52:19 AM »
Hi Rupali,

:welcome to the site.

The permanent cure for this disease is via stem cell transplantation from Bone Marrow or Cord Blood which are subject to perfect matching donor.

Furthermore Gene Therapy is under development. Let's hope we achieve a breakthrough in this regard real soon.

Please feel free to ask more questions that you have in mind.
اَسّلامُ علیکم Peace be Upon you
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