Hi from singapore... any others?

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Hi from singapore... any others?
« on: October 14, 2008, 02:33:20 AM »
Hi,

I am 30 yrs old thal major residing in Singapore.
I stopped blood transfussion since 27 yrs old as my doc here asked me to do so :) and I just started on ferriprox this week.

Any one else from Singapore here?

cheers...

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Offline sahil

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Re: Hi from singapore... any others?
« Reply #1 on: October 14, 2008, 03:21:51 AM »
Hi Teddy!!

I am a thal major too but not from Singapore. I'm from India. Your post has stunned me!! You being a thal major have not taken blood transfusions from past 3 years, how is that possible? What kind of treatment you are on? Have you got your splenectomy done? If yes, then when?

I would really love to know how did you get off transfusions.


\peace/
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.

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Offline poo gill

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Re: Hi from singapore... any others?
« Reply #2 on: October 14, 2008, 06:50:58 AM »
Hi Teddy

I am from S'pore. Were you at the conference.
My son has thal intermedia.
Tell us more abt yourself.

Take care


"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Lyanne

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Re: Hi from singapore... any others?
« Reply #3 on: October 14, 2008, 01:09:24 PM »

   Hi! Welcome to the group........Teddy....... I'm also a Beta thal patient and just like you I stopped having blood transfusion 5 years ago. Although I had a transfusion a year ago because I got sick and my hb got really low. Anyhow, please tell us a little more about you........  :welcomewagon  :welcome
« Last Edit: October 15, 2008, 01:47:17 AM by Lyanne »
LYANNE :yahoo

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Offline Zaini

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Re: Hi from singapore... any others?
« Reply #4 on: October 14, 2008, 03:25:09 PM »
Lyanne,

I never knew you weren't transfusing  :noway really how do you maintain your hb without transfusing if you are a beta thal major? You haven't been transfusing since 5 years? it's hard to believe,,then you must be iron free?

Here i thought i know every one on the site  :huh .

Zaini.
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Offline Sharmin

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Re: Hi from singapore... any others?
« Reply #5 on: October 14, 2008, 03:36:30 PM »
Teddyjas,

My son is a thal major, and we live in Canada.  Welcome to our site.   

I am also interested in hearing how you guys are transfusion free - that is awesome!!

Sharmin
Sharmin

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Offline nice friend

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Re: Hi from singapore... any others?
« Reply #6 on: October 14, 2008, 03:55:05 PM »
WOW .
unbelievable but true ,,,,
are you people on any medicine to maitain HB .??
please share something about your medicines and treatment with us ....
its realy nice to hear something like this .... please have some words about
how it happen ..  and complete treatment and medicine details .. if you can ..

Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Lyanne

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Re: Hi from singapore... any others?
« Reply #7 on: October 15, 2008, 02:07:45 AM »

   
    Hi! Zaini . What can I say!It's amazing but true  :grin I just maintain vitimins E, B complex, Folic acid and as for me being iron free nah I do have  at least twice a month of chelation :nurse to keep my iron low......I did have my splenectomy when I was 15 and my transfusion needs became less often and gradually noticed that my hb count got stable to a certain number. :yahoo of course, I'm sure our fervent prayers  :pray were finally answered. :pray.
LYANNE :yahoo

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Offline Sharmin

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Re: Hi from singapore... any others?
« Reply #8 on: October 15, 2008, 02:10:00 AM »
That is so great Lyanne!  I am so happy for you!   :yaaaaaay



Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Hi from singapore... any others?
« Reply #9 on: October 15, 2008, 02:22:43 AM »
Lyanne and her sis have always fascinated me because they both stopped taking regular transfusions years ago. This brings up the gray area between intermedia and major. Intermedia is such a vague classification so maybe it applies to the sisters in some way. I think many intermedias have been transfused when they were young in order to counter slow development and failure to thrive. Their Hb levels may be closer to an intermedia range than major but if normal development is not taking place, it makes sense to transfuse. However, once grown and development has finished, patients may be able to become transfusion free, as their Hb maintains high enough to manage without taking blood. Lyanne is also taking some very important supplements and I am sure they help her produce blood and keep her energy level up. This should be an important part of all thals' health programs.

I think this is a lesson for parents of children who are on the borderline. If your child is not thriving, it makes sense to transfuse. It may not result in lifetime dependency but only during the growing years and normal development is of extreme importance because it cannot be made up later. Once the child becomes an adult, a review should be done to see if reducing or totally eliminating transfusions is a possibility. One young patient that comes to mind is Kathleen's child, Olivia. She may need to transfuse regularly or sporadically as she grows but as an adult it may be worthwhile to explore the option of reducing or eliminating transfusions altogether.
Andy

All we are saying is give thals a chance.

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Offline poo gill

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Re: Hi from singapore... any others?
« Reply #10 on: October 15, 2008, 03:32:45 AM »
wow this is awesome, I  had to pinch myself that i was reading correctly.

Lyanne - this is really good news. What is the hb you are maintaining. Have u ever got the DNA done? if we get the mutaitons maybe we wil have a better idea. I am ecstatic this is like major becoming an intermedia. I have heard intermedia becoming major but this is the other way round.

Andy - this is why I guess Doctors  keep on insisting tht intermedia's are so complex and is based on clinical study of individual patients and no two patients will be the same. Also yes it is important to transfuse theintermedia's as and when their body needs but only one concern that what ever bone marrow function happen;s will that shut down or not. May be sporadic transfusions can be the key.

Also in lyannes case it must be the spleenectomy which would have helped along with continuous vitamins.

"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline Andy Battaglia

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Re: Hi from singapore... any others?
« Reply #11 on: October 15, 2008, 03:52:40 AM »
Puja,

You said it perfectly.

Quote
...intermedia's are so complex and is based on clinical study of individual patients and no two patients will be the same.

Intermedia ia a vague classification, but actually we have seen that within all classifications there are great differences. This is why it is so important to design treatment specifically for each patient, as is done in the comprehensive care centers.

And yes, the splenectomy most likely has some effect. It doesn't help all intermedia patients long term but many are able to remain transfusion independent for long periods.
Andy

All we are saying is give thals a chance.

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Offline Lyanne

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Re: Hi from singapore... any others?
« Reply #12 on: October 15, 2008, 03:58:11 AM »

       Hi! Sharmin and poo gill.Thanks! Even the doctors here are amaze on how we stopped having transfusion since I have been worked up and diagnosed as beta thalassemia but I guess As Andy said there are some vague classifications of intermedia that applies to me and my sister..... or maybe because we had an early treatment of desferal ? is that applies Andy? Anyhow, my hb is always on the 9 levels but whenever I get sick it's the first thing that go down.......as for DNA I guess not, but when I was 2 years old I had a lot of laboratory test including the test confirms that I am a thalassemic and a Major at that......... and since then it's like a routine after a month my hb would go low 6-8 then I have to be transfused. :wah hmm...... thinking of it I miss that routine...... LOL! but I would not want to do it again, it's really tiring and stressful :noway
LYANNE :yahoo

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Offline Zaini

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Re: Hi from singapore... any others?
« Reply #13 on: October 15, 2008, 09:33:57 AM »
May be we'll be able to do the same with my daughter when she grows up,but what worries me is the duration between her transfusion which has been decreasing since she started transfusing,we started with 6 weeks and now she is on 3 weeks.Last time doc gave her appointmenet for 4 weeks but i feel like her hb is low as she is looking a bit pale.

Zaini.
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Offline sahil

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Re: Hi from singapore... any others?
« Reply #14 on: October 15, 2008, 12:43:44 PM »
Zaini,

Your daughter is an Intermedia, why don't you try Hydroxyurea?
My formula for living is quite simple. I get up in the morning and I go to bed at night. In between, I occupy myself as best I can.

 

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