telling people about thalassaemia

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Offline Andy Battaglia

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Re: telling people about thalassaemia
« Reply #15 on: October 18, 2007, 03:01:48 PM »
This is an interesting topic that has been brought up previously. I would like to note that in our current discussion, it seems that more people are willing to be open about their thal, and I think this is a good trend. Although one's health it is not anyone else's business, when it does come up, if at all possible, people should try to be open about thal, as the opportunities to educate and create awareness about hemoglobin disorders, should be exploited. Only by creating awareness of these widespread disorders, will we be able to help prevent them from happening and also get the necessary attention to attract the interest and funding necessary.

Lisa was very open about her thal and never tried to hide it. As a young child in school, she asked other students when they got transfused, as thal was the norm for her and she thought everyone must be getting blood. Everyone knew about her thal and no one thought the worse of her for it. When she became seriously ill, her employer, the Rochester Police Department, through the efforts of our now Mayor, Robert Duffy, made sure that Lisa continued to receive her pay once she could no longer work. This would not have been possible if Lisa had hid her illness.

However, I need to point out that not all cultures are so accepting and in many cases, hiding one's thal may mean improving chances for education and employment. It was not long ago that we had a discussion about the "stigma" which is what thal is sometimes called, and we learned that in many places, this "stigma" is still very much alive and causes great problems to thals. In these situations, it may be prudent to keep one's thal private as much as possible, even when trying to create awareness. Each parent or patient must weigh the different factors involved before announcing that one is thal. What might be fine in Chicago may create ostracizing in a less accepting culture. Our goal, of course, is to create a world where anyone can openly reveal any medical condition without fear.
Andy

All we are saying is give thals a chance.

Re: telling people about thalassaemia
« Reply #16 on: October 18, 2007, 06:58:31 PM »
I agree with you Andy, for most it is a calculated guess of their environment. Be open as well as passive in certain situations.
Regards.

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Offline KHALIFA

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Re: telling people about thalassaemia
« Reply #17 on: October 18, 2007, 10:45:57 PM »
Hi
 Am as a father of X-thalassemia child i never feel shy to talk to other PpL a bout my experiance with the thalassemia..... opposite of that i feel proude that i learn my self how to protect my child and also to explain to other couple who want to get marry to go and make blood check ...any way this is my disteny i can't change it  :dunno  just be happey and life as you want and make love not war  :hugfriend  :biggrin
                                         khalifa
                            one for all and all for one
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Kathy11

Re: telling people about thalassaemia
« Reply #18 on: October 19, 2007, 09:49:45 AM »
 :clap  good one  KhaliFa.
Its good to feel comfortable in one skin.
Kathy

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Offline mrtariqkhan

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Re: telling people about thalassaemia
« Reply #19 on: October 19, 2007, 10:20:23 AM »
Rightly said by Andy- cultures is the most important factor........ 

Emommy - Thanks,  thumbs up to you too may God give all the happiness to you and your kids... kids  certianly are the best of creations...

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Offline eesha

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Re: telling people about thalassaemia
« Reply #20 on: October 21, 2007, 01:28:56 PM »
i dont knw guys i think its easier said than done about telling pple about my thal. i have always hidden it i mean when it was in my pernts hand they told my school and everything, but i didnt tell my friends. as i was only off school once a month i would make up an excuse although the school knew, i didnt tell any fellow pupils. since i have started work i have never told my colleagues or my boss as i have worked part time up till now so i didnt have to take days off for transfusion and uni was flexible timetable so i dint have to tell anyone ther either.
if someone asks me i deny it. i dont knw why i feel like this. i accept i have the problem and i do all my treatments but it is all in my private life. all my relatives obviously know, but i hate it when really distant relatives come and they say oh is she the girl that has blood and then they pity me and feel sorry for me, but my close rels and community treat me like normal.
but i still have that dilemma of how do i tell work now that i have said no i dont have any medical problems. i have only come across this problem now coz this job is full time , even though i have arranged  for transfusions on weekends i am scared there will be a situation or an appointment that i will have to attend and with wrking full time i will have to tell them.
i still dont want my coleagues to know, but just for it to be on my record in case anyhting happens.
i dont knw how to approach the boss and tell her as she is very stern and will really shout at me for not telling her before,. so can anyone help???

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Offline §ãJ¡Ð ساجد

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Re: telling people about thalassaemia
« Reply #21 on: October 21, 2007, 01:47:06 PM »
Hi Eesha,

The best thing for you for now is to explain your colleagues in a strategical way that they won't go off saying "Why didn't you tell us earlier?" when a situation arises.

First of all tell your boss about it. I hope he is an educated person with some respect for other people when confronted for discussing a personal matter. So approach him/her by saying that you have something important to discuss and give him/her a brief hint that it is related to you and could need some special considerations when a situation arises. Similarly do the same with your close colleagues and ask them not to make an issue of it since they will discuss with each other in your absence. Tell them to spread the word (if they decide to discuss) in an awareness kind of fashion and redirect the people to you so that you can clear things up much better.

I know it is really hard to do this but you need to gather all the courage you can get. Furthermore there is no rush to do it all in one day with a BANG. Start with your boss. You really need to do that as soon as possible and then move on to the colleagues when you think you are ready for it.

Remember, it's the first step that is the hardest one.
اَسّلامُ علیکم Peace be Upon you
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Offline Andy Battaglia

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Re: telling people about thalassaemia
« Reply #22 on: October 21, 2007, 03:44:53 PM »
Eeesha,

You may be protected by law from any repercussions if you admit your thalassemia. I know this is the case in the US and is most likely the case in the UK. Employers in the US cannot terminate an employee because of a health condition. You may want to check this out before announcing your thal.

Also, don't think that people will necessarily feel sorry etc. as thal does not have the same stigma in the west that it does in many other places. It is considered a manageable condition and should be explained as such.

Above all, what you tell anyone is a matter of your own decision about your privacy and it is really no one else's business. It is up to you what you choose to disclose. I think ThalGal's advice is very good here. It should be your choice and only yours, what you decide to disclose.
Andy

All we are saying is give thals a chance.

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Kathy11

Re: telling people about thalassaemia
« Reply #23 on: October 22, 2007, 12:53:01 AM »
Hi Eeashs.
You have few option at your disposal.

Think was is really important to your well-being and peace of mind.

you could    either write a letter  or make an appointment  to   talk with your   boss ,about your illness and your concern and your fear of discrimination as regard to your condition.

 you could also think if,  It is worth working for a boss that is stern and hard to approach,

you need to know that you  are  a valuable member of this work force  too, you bring your skill which is very valuable and you need to be consider,
Have faith in your capability, do what is best for you ,

you deserve to have peace of mind ,work without  the stress of the secret you carry, I hope you decide to do the right thing for you.goodluck.
Take care Kathy



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Offline ThalGal

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Re: telling people about thalassaemia
« Reply #24 on: October 22, 2007, 03:27:24 AM »
Andy, you are correct, there are laws to protect employees from repercussions.

However employers (especially in the corporate world) have become very savvy, they may not terminate you for your condition but suddenly your quality of work comes under scrutiny, even if it’s the same as before they find out about the thal.

I believe if your condition (any condition) does not affect your work or prevents you from doing your job then there is no reason to tell, unless of course you chose to.

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Offline eesha

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Re: telling people about thalassaemia
« Reply #25 on: October 25, 2007, 06:33:40 PM »
hey guys
thanks for ur advice
its noty the discrimination im worried about i just know pple will feel sorry 4 me. so i am gna find a way to tell my boss first and tell her to keep it confidential then its up to me hwo else i tell.

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Offline §ãJ¡Ð ساجد

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Re: telling people about thalassaemia
« Reply #26 on: October 26, 2007, 05:48:38 AM »
Good going Eesha,

I'm sure that you will feel a lot better and confident after telling your boss.

:goodluck
اَسّلامُ علیکم Peace be Upon you
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Re: telling people about thalassaemia
« Reply #27 on: October 27, 2007, 11:29:03 PM »
I agree i think it is an individual personal matter & everyone should do whats right for them
in their situation.Some people find it hard to tell others and others are very open & dont mind
telling anyone they know.I can totally understand eesha's problem,my experinces in the past
have been very negative from people.As soon as i mention the word blood people run amile
and have even assosicated it with hiv aids.I have never felt sorry for myself,but when people
in your lives such as partners or people you know & work with react bad to it,there comes a
point when you say to yourself i wont tell anyone its a personal thing,so eesha i understand
your point.For others who have not had this experience,its really hard for them to understand
how others can be so negative.

 

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