Share all....struggles and successes and jokes......

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Offline anjali_zakky

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Share all....struggles and successes and jokes......
« on: October 24, 2006, 05:27:55 PM »
Hey...

I am there in Delhi in International Conference of TIF to present a lecture on "Thalassemics : Education , employment and social acceptance "....rather than a boring long lecture that nobody understands or even cares to listen ..i wannna present real life cases...So to all of u...plz send me ur current status as to where are u now ..doctors , enggs , lawyers. business , comp sector ...etc etc etc ..and what all difficulties u had to face in ur education , employment or on social front and how beautifully u come over it....it wud be a moral boost to so many....plz support ur details with newspaper / media coverage ...u can scan and send me the photographs , newspaper clippings etc....hey if v are able to boost even one thal ...i think its worth it..worth the time spent ...so plzzzzzzzzzzzz do it. v have been lucky enough to hv moral support..others deserve that moral boost too......

plz come over and share some practical jokes that u came across coz of thal.

u may send me the details on my id : anjali_zakky@yahoo.com

Anjali
Cheers nd Keep Smiling !!!!!!!!!!! :)

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Offline namitha

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Re: Share all....struggles and successes and jokes......
« Reply #1 on: October 28, 2006, 11:37:31 AM »
Hi,

I am glad ur speaking on this topic which is relevant to adult thals. Apart from showcasing the successes, you could also talk about the discriminatory attitude of organizations. See the post by Shikha Aunty and others on Education and Jobs. These are bad precedences. We need a law preventing discrimination against thals. We need an equality of opportunity law or we are end up with only a few people doing good in education and jobs with some people left behind. I request you to touch upon this topic and speak on behalf of those thals who have been the victims of discrimination.

On my front, things were smooth sailing for me. I was extremely fortunate to study in good institutions like Cluny Convent, MES College and Univ. Dept of English, Bangalore University. Wherever I went the faculty were very supportive and understanding. Everybody went out of their way to ensure I was comfortable. I got leave whenever desired. I got the gold medal for my MA in English for the year 2003-04. I must mention that the faculty at the Univ. Dept was behind my success. They motivated me and went out of their way to ensure that I realised my potential. After my MA I got to do a research project at the Indian Institute of Science, Bangalore. I was a research assistant in the Department of Management Studies. Everybody was supportive and my project investigator knew about thal and I got leave whenever i needed. Currently I am a content developer and manager with an educational organization. I am very happy here. Everybody knows my problem and are extra supportive.

The story doesnt end with me Anjali. There are thals in Bangalore who have faced discrimination in employment. Well qualified thals are forced to conceal their problems for fear of discrimination or denial of job. Please speak for them too!

Good Luck!

Regards,
Namitha

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

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Offline §ãJ¡Ð ساجد

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Re: Share all....struggles and successes and jokes......
« Reply #2 on: October 28, 2006, 01:52:40 PM »
OH... Wow! Namitha!

First Rank and a gold medal. That is really cool!

Take care, Peace!
اَسّلامُ علیکم Peace be Upon you
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Offline jzd24

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Re: Share all....struggles and successes and jokes......
« Reply #3 on: October 28, 2006, 10:04:02 PM »
Namitha,
     You have done so well! I am proud of you. It is wonderful that you are in such a supportive work environment. I wish all thals could have that -  it's great that you speak up about the inequities.   :jumping   Jean

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Offline akka1981

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Re: Share all....struggles and successes and jokes......
« Reply #4 on: October 29, 2006, 04:26:22 PM »
Hi Namitha,

Congrats! v. proud of u. You 've sent an example that thals too could do well if v are confidnent and society is cooperative.

AM sure all our thal bros and sis too could do great in life. All the best to you all.


Luv
Akka

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Offline anjali_zakky

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Re: Share all....struggles and successes and jokes......
« Reply #5 on: October 30, 2006, 09:22:53 AM »
Thanks a lot for the info and Congrats !!!

I am research scholar IIT Roorkee working in area of Information Security . I was there in Bangalore on 24 April where I participated in Microsoft's Imaginecup and showed my research on  Genetic Analysis for diagnostics in Targeted Domain : Thalassaemia....I m still working in this area of gene analysis in Thalassaemia .

I have also won 3 gold medals in my B. Tech ..topped my Univ. in UP and won highest attendance and best engg. awards !!!!!!!!!!  :yahoo :cheerThen I got job offer from TCS and was selected on campus ..but denied job after my medical tests  :wah . In the mean time I had appeared in GATE exam and got All India Rank 51. So I got admissions in IIT for M. Tech.

NTWS at Delhi has filed a case in supreme court ...

But now I feel that it was good . Had I not been rejected ..I would not have thought for masters and not worked so much on genetic analysis in Thalasemia....the project that got approved by Microsoft in Bangalore ......

I'll try to put up this topic as nicely as possible ...can u get in touch with those ppl in b'lore and get their details to me ..meanwhile plz send me a pretty pic of urs !!!
Cheers nd Keep Smiling !!!!!!!!!!! :)

Re: Share all....struggles and successes and jokes......
« Reply #6 on: October 30, 2006, 05:43:55 PM »
Hi Anjali,
It is great that you are presenting on this topic. Exposing the discrimination being done by major organizations in India is extremely essential for the future of Thals. I too had a bad experience when I was in India. I got a BA in Economics from the University of Pune, and an MBA from IMDR, Pune. I was offered a job with P&O Nedlloyds, an Anglo-Dutch shipping company, and they rejected my offer after my medical tests. That was when I decided to come to the US and life has been quite different since. I got my MA in Economics, and now work as a Health Economics Consultant for Pharmaceutical companies. I have not seen any discrimination in my 5 years of working life in the US. In fact, I am encouraged to take as much time off as I need for doctor's appointments, transfusions etc, and to work from home whenever I need.
I hope this helps you. Please feel free to email me if you need any other information.

Re: Share all....struggles and successes and jokes......
« Reply #7 on: October 30, 2006, 06:08:52 PM »
Hi Anjali.. the above is from  :).. my daughter.. i guess I already gave you the details ..

shikha
« Last Edit: July 15, 2007, 05:25:30 AM by Andy »

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Offline anjali_zakky

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Re: Share all....struggles and successes and jokes......
« Reply #8 on: October 31, 2006, 03:37:54 AM »
Ya..Dee ..i know u quite well now !!!  :biggrin
« Last Edit: July 15, 2007, 05:25:49 AM by Andy »
Cheers nd Keep Smiling !!!!!!!!!!! :)

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Offline Madhavi

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Re: Share all....struggles and successes and jokes......
« Reply #9 on: December 17, 2007, 07:58:20 AM »
Guess I am writing a little too late on this post front....but liked the topic and thought of penning something here.....
Actually what I would like to ask most of you is how often and when do you really need to tell somebody about your status as thal-major.....you may wonder this is a weird question...but what actually brought this up is the fact that almost since the time when Mohanish(Mo) was 9 months I have been here in China....away from the supposed society in India....where people are almost living your life with you.....the thought of going back even for a visit really puts me off....because even if it is close relatives, I dont wish to subject my son to their oohs and aaahhhs as we start the pump etc.....I wonder if you all face the same kind of feeling......as of now there isnt a trip planned but even the thought of facing that again puts me off. Here in a foreign land it really doesnt matter much....
I feel that it isnt the patient who takes it to heart on his own, it is the people around and how they treat him about it.....for us our son is absolutely normal....infact more than a handful already.....but to anyone else, his being thal-major changes their attitude,perception to a certain extent if not more.....Infact to prevent people doing that to him, I have hardly told anyone except a few doctor friends back home in India. Wonder if I am sailing on this boat alone?
What say you all?
Madhavi
Love and luck to all...

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Offline red

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Re: Share all....struggles and successes and jokes......
« Reply #10 on: December 17, 2007, 10:00:36 AM »
Manojmass-

i think its up to the parent to make a constructive decision..whether the child grows up later and likes it or not..but i think just the shear strength of the parent and also their confidence in the desicion they made , is going to show the child that the parents were confident..and that will mean alot. (no matter if the child decides to go by his/her own decisions later)..
with the topic of telling people..he/she will grow up and decide on their own personal beliefs about it..
but..if you want my personal opinion..i think it is good to tell people (relatives, friends ect.)..cuz if it is held back..the child will most definetly feel that inner tension coming from the parent..and that in itself will not be good at all..nor for parent or child.  and i think if the disease is shown in a casual light by the parents than, (hopefully) in turn the people who communicate with the child will be able to talk to him/her about it more openely and freely.  basically i think if the parent shows from the start they are comfortable talking about the disease, the child will grow to be comfortable talking about it as well.. cuz it is never good to hold anything in.  especially something that might be bothering you. not to say that the parents are bothered by the illness, just the apprehension of the child being judged.  but like i said, i think if the parent talks about it with confidence and a easy-going attitude, the child will be effected in a good way. i think if its talked about it will give a better understanding of the kind of people you are dealing with too..if someone gets uncomfortable or shocked or scared or worried or judges, then those are all reflections to think about and say "wow, thats great that i atleast now know this person a little better" and then maybe one can reflect on themselves afterwards in understanding more of what they want from themselves and the world. 

my personal story is that my parents didnt really talk about it with anyone (or i dont think)..not my relatives, not their friends, not even me ..so..i kinda grew up holding most of the stuff in, cuz i thought my parents were always sad about it and i didnt wanna hurt them more..but mostly..i really didnt understand what was going on , and i wanted too..but really sometimes i was too afraid to even ask cuz i didnt know what effect that would have on them.  they never really had "a talk" with me about it or anything.  i'm not trying to show my parents in a bad light..they were amazing, treated me with so much love.  when your a kid though, this stuff happens..if you think something bad is happening to your parents you wanna protect them.  and my way was i guess not talking about my fears for fear of hurting them.  in the end, it just makes things more uncomfortable for everyone..for the kid, the parents, even the people who dont know... cuz then, everyone will feel the tension in that person when they are dealing with them.

so yeah..sorry about the personal details..i know you didnt ask for it, but i thought it might 'take you into the brain of an older person with thal' ...hahah :wink

but dont worry..from the sounds of you , you sound like a parent who will learn anything with open arms in order to make your kid understand happiness .. with or without the thal..
so i think your fine..

much :heartred and :peace to you!

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Offline Madhavi

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Re: Share all....struggles and successes and jokes......
« Reply #11 on: December 17, 2007, 10:29:35 AM »
Thanks for that reply.....
I am glad that I could get your own point of view.....the hassle is not about our taking things about thal as such....it is about the reactions of the people and how they may change the way my son views himself. He understands a little now and I have been telling him things like he needs to get blood and that gives him extra unwanted iron which is why we need to give him the pump and remove the iron thru his poo and pee.....he can tell u that himself though he talks only a little....so the way we look at him is absolutely normal....and he is normal....only a little special maybe as special as any kid would be to his parent......!
But I guess as he grows up he will be wise enough to make his own decisions as we guide him prior to that......my problem basically pertains to people back home in our country who happen to survive on other peoples tales and treating people in a way which may not be known to all in other places.....but maybe in the end people and their mindset are the same....and your reply will definitely help......
Its nice to have a window to this special world with you all.......
And yeah thanks for saying that we do seem like parents who care!lol!Sometimes one does need a pat on the back!
Love and luck to all...

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Offline §ãJ¡Ð ساجد

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Re: Share all....struggles and successes and jokes......
« Reply #12 on: December 17, 2007, 02:18:32 PM »
Hi Madhavi,

We had a discussion about this topic here is the link:

http://www.thalassemiapatientsandfriends.com/index.php?topic=1270.0
اَسّلامُ علیکم Peace be Upon you
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Offline Gaurav

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Re: Share all....struggles and successes and jokes......
« Reply #13 on: February 10, 2008, 02:55:45 PM »
I'm a businessman, i'm in jewellary manufacturing. I'm working in my father's company since i was 14(cause i wanted to take care of all my medical expenses on my own)

gonna start my own business soon.
Gaurav Bothra

 

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