THALASSEMIA N ME

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LIVING WITH THALASSEMIA ( MY OWN PROSPECTIVE )

Posted by Goh Chun Hui on May 30, 2011 at 6:35 AM



Hey everyone I am here to share with you guys on the topic Living with Thalassemia, on a patients prospective or at least of my own point of view.



Living with Thalassemia is always the toughest to me when I first having to accept myself as a patients. Receiving and having treatment for a lifetime which is painful both physically and emotionally. And that imposes a heavy financialand emotional strain on my parents and family.



The list of lifetime treatment of course are having monthly Blood Transfusion and the countless number of chelaters treatment plus these you can think of.



More so if you're around my age group, you have properly started with Desferal Infusion as your chelaters which might be the first thing you want to get rid off after getting cure with Thalassemia as I beileve you have in mind the reason.



When I am in my teenage years, like some of you guys now. I am always shorter in height as compared to my classmate and friends, and that always bother me. At that time, I always try everything that I heard that can make me taller Example: Drinking Milk, Doing Certain Exerise. And later I found out when it's time your body want to grow, it will grow. I always don't have much confident at that time as I can't faced myself as a person.



Until one day something really make me determined to change myself for the better. Which I don't expect that will happened to me this early in life, that my dad had passed away. At that time I am only 18. It takes forever for me to get through the anger and loss.



So how do I get through it ? That's a great question.



Beside thinking that life is too short for all that and now is my time on earth, if I want to do it that badly, I should be able to make it.



Therefore I started looking and trying quite a few jobs. Not going to lie, until now I still cannot get it done by finding one really suit me.



Getting a suitable job is always a major issue/concern amoung all Thalassemia Major Patients.



Why, why is that so ?



Firstly let's take a look on the view of concern on the patients prospective when applying for a job.


 

  • I am not be able to commit a full-time job as I offen have to ge for appointment at the hospital.

 

 

  • I can't take it, my body get tried easily.

 


 

  • What if my employer and others will think if I told them I have Thalassemia condition.

 


 

  • Now let's switch the angle and take a look at the concern the employer may have.

 


 

  • What if something happened to him/her while working here, I am the one who will be respondable for it.

 


 

  • What if he/she always on leave due to the condition and can't get the work done.

 


 

  • I should safe all the trouble by just employ a healthier person to get the work done.

 



Lately I had been building and working on my site on Thalassemia, which name THALASSEMIA N ME leading me in getting the Singhealth Most Inspirational Patient Award 2011 early march this year and so can everyone.



Ok that's it for now on sharing with you guys on living with Thalassemia, my own life journey as a patient. Hope you enjoy it (:

 

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6 Comments

Reply Nandinee Dwarika
8:59 AM on May 31, 2011 
I have a little girl of 7yrs who is Thal. major.
I understand ur point of view n its obvious that one should always b optimistic in life. I appreciate ur dedication n courage n am sure u will be successful in evrythng u do.
Reply Goh Chun Hui
11:19 AM on May 31, 2011 
Nandinee Dwarika says...
I have a little girl of 7yrs who is Thal. major.
I understand ur point of view n its obvious that one should always b optimistic in life. I appreciate ur dedication n courage n am sure u will be successful in evrythng u do.

Thanks Nandinee Dwarika, really appreciate your effort leaving a comment and your nice and sweet word. Bless your family the best:)
Reply Anu Sharma
1:16 AM on December 26, 2011 
I am a 30 yr old Thal intermediate patient but have all the symptoms of a major.
I can really understand wat u said and how u must have taken charge of your fears and weaknesses. I appreciat that u have taken time out to bring ot such a site for other Thal friends to join and share their views... Good work dear..And carry on the good work..
Reply Goh Chun Hui
4:21 AM on December 26, 2011 
Anu Sharma says...
I am a 30 yr old Thal intermediate patient but have all the symptoms of a major.
I can really understand wat u said and how u must have taken charge of your fears and weaknesses. I appreciat that u have taken time out to bring ot such a site for other Thal friends to join and share their views... Good work dear..And carry on the good work..

Great hearing from you Anu, and thanks for your kind words. I will continue doing what I can(:
Reply loy
6:33 AM on August 24, 2012 
chun hui and all thal patients, be strong!!! we born to be that, but we can live it differently....
Reply Goh Chun Hui
7:19 AM on August 24, 2012 
loy says...
chun hui and all thal patients, be strong!!! we born to be that, but we can live it differently....

I know loy, thanks for the encouraging words, I do beileve most thal patients are strong. Let's live in differently but amazing together.