POLL

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Offline Angel123

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POLL
« on: November 09, 2007, 06:42:57 PM »
Hi Everone,
My name is Sammy and I am a friend of a patient suffering with Thalassemia major. Recently we had a discussion in classroom about problems patients face and their biggest fears about their individual problems. I chose Thalassemia as I think that its the most interesting and would like to know what are the current problems patients face.

since being introduced to this website,I saw that the people writing in are from all over the world really and would be really happy if everyone would respond by saying what their main problems are in their own country. I feel that this is important as it may be able to be a way of assisting those who already got past those problems.
please respond
[Sammy

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Offline Manal

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Re: POLL
« Reply #1 on: November 10, 2007, 12:05:19 AM »
Awareness is the main problem here. Since you are not aware of the disease, so everything is a problem

Manal

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Offline §ãJ¡Ð ساجد

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Re: POLL
« Reply #2 on: November 10, 2007, 05:37:10 AM »
Hi Sammy,

You can find all the answers to your questions in the "Living with Thal." section where you will find a comprehensive discussion about living with thal. w.r.t where each member is from.

Here is the link: http://www.thalassemiapatientsandfriends.com/index.php?board=10.0

I hope you will find great deal of information in detail there.
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

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Offline Zaini

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Re: POLL
« Reply #3 on: November 10, 2007, 05:48:22 AM »
I agree with Manal,awareness is a very big problem,people and sometimes even doctore don't know much about the disease,another problem is cost,the cost of transfusion and drugs related to iron chelation ,these drugs are quite costly.

ZAINI.
^*^Xaini^*^

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Offline Lyanne

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Re: POLL
« Reply #4 on: November 10, 2007, 06:54:50 AM »
I also believe in the biggest problem is AWARENESS...... patients and doctors as well as the pple around the patient...... lots of the patient are mismanaged and misdiagnosed because of the doctor they see, they(the drs.) usually mistaken it for iron deficiency so they give large amounts of iron vitamins and that's really where the problem starts, inadequate knowledge about the illness could lead to many problems....... also the management of the illness because the medicines are not that cheap and some patients are having difficulties to comply with the treatment, and so complication arises from lack of treatment, and that's the worst problem having complications from the illness.
LYANNE :yahoo

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Offline KHALIFA

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Re: POLL
« Reply #5 on: November 10, 2007, 10:33:13 PM »
The biggest problem i ever met deuring my son treatment is not a bout the cost of the drugs because my goverment make everything is free almost everything BUT the main problem i met is the DOCTOR who i deal with them they don't have enough knowledge to make the paerants satisfy and keep them cool and calm .. i think they must teach those doctors how to deal with the father and the mother ... for this reason i studed and looking for any thing a bout hematologist and how i can treat my son, what he need ,what kind of drugs is ok for him and which one is not fine ,when i have transfuse blood , also the desferal all that things i teach my self ... i have a child he came to this life and he need somebody look after him ... for this reason i remember when i was in italy some Dr. thought am a doctor ...
                                                   khalifa
                                             state of kuwait
                                       one for all and all for one
« Last Edit: November 14, 2007, 11:36:23 PM by KHALIFA »
RED_PILOT

Re: POLL
« Reply #6 on: November 14, 2007, 01:54:03 PM »
Khalifa,
i agree with you totally. I would like to think that I am a professional about my treatment regime.
We are all responsible for our individual paths.Since doctors come and go all the time we need to be vigilant in ensuring that we are all monitored properly. It is especially important now that there is some sort of competition on the market on chelators. I think that we should ensure that we accept options that are proven and tested rather than ones supported because of how wealthy the company is.

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Offline Angel123

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Re: POLL
« Reply #7 on: November 14, 2007, 05:48:38 PM »
Hey Guys,
Thanks for the replies. I do realize that awareness is the biggest problems as a lot of people are still not aware of what thalassemia is.

Its sad that its this way especially since it affects life so much. I am wondering therefore if there are special programs going on in each country to try and educate everyone.

One thing I can think about is a competition in schools internationally to award the best group submitting information and ways of educating the public at large.

what do you guys think?

Maybe other ideas?
thanks
[Sammy

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Offline red

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Re: POLL
« Reply #8 on: November 14, 2007, 10:00:10 PM »
Hey Sammy whats up...red here :)
I appreciate your project..it's very noble of you especially as a friend of someone with thal to want to step up and speak out to the public.  You have my many thanks! 
As someone with thal myself, I find the biggest problem here (i'm from the U.S) to be lack of expression.  You could call that awareness.  What I mean is that, I strongly feel that a productive way to get thal issues circulating hopefully to the point of agknowledment by government funds and support, is to put thal out there in the MEDIA. 
There are programs out there that do outreach, like T.A.G (thalassemia action group), and The Cooley's Anemia Foundation that I know of in the U.S..there are many more groups such as these all over the world.  But in the U.S..there has not been media exposure. 
I feel that if an informative commercial is broadcast, as they are on many other forms of illness, that people would actually say 'wow, this exists?'  And then, who knows, hopefully it would make for more Blood Drives or individual donor action...or maybe even a celebrity to come out to the media about thal.  I actually think that that would draw most attention.  Maybe then, kids with thal or any other person effected by it, would be motivated moreso to speak up about there own story, as it is a very private matter to most.  An outpour of circulating thal around the world :) 

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Kathy11

Re: POLL
« Reply #9 on: November 14, 2007, 11:18:20 PM »
Red.
I'm so Proud of you ,your Ideas is constructive and can produce , productive result.Hope we all do our best to continue with voicing our views and teach the world to recognize the problems that Thal patients faced in their day to day lives.
I know that it has been mentioned in severals postings that its our bussiness whom we told about our disorder,that is for certain,but i would argue that unless we tell people about the disorder.they won't get to learn about it.
I take it upon myself to tell everyone about my condition in the hope that they will find out more about it and in returned educate others and thus will bring changes in people outlook and hopefully it will help our cause by getting more funding for research.and also the most needed fund to help  developing contries.
I make sure I dont miss an opportunity when it arises,especially where i know it will make a differance.
we all can do our little bit for the kind of awareness that require  change in any situation.
My hope is That
One day Thal patients  will be accepted and recognized for the strong individuals we all are.
I have faith and I dream for change.
The walk of a thousands miles commence with one step
Kathy

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Offline Zaini

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Re: POLL
« Reply #10 on: November 15, 2007, 06:58:19 AM »
Nice idea Red ! :thumbsup

See guys ,this is the attitude we want in all the thal patients,thinking positively,having thal is not like your life is over,i know it's very difficult, i am a mom of a thal patient my self,but what  i'd want for my daughter would be to have a positive and bright attitude towards life,i always tell her that she can do anything she wants to do,through hard work as any other person in the world,i don't think of her as an exception.

LOVE ALWAYS,

ZAINI.
^*^Xaini^*^

Re: POLL
« Reply #11 on: November 16, 2007, 03:32:11 PM »
Hi There Folks,
So why dont we all decide on a particular idea and then all do it in our respective countries. i think it will really be neat especially if we all coincide it on the same day like May 8th or something. I know that there are some stuff happening around that sma etime but we may get more publicity if we do it as a team. we can also try and get the main groups involved if our ideas are good.

what do you think folks, please lets get going on this....I think its a fabulous idea....Andy???

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Offline Angel123

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Re: POLL
« Reply #12 on: November 19, 2007, 05:35:57 PM »
B Thal Girl
Thats a wonderful suggestion , its what I was thinking about. I feel a great idea may be a school competition where the children entering would have to do ample research (much like me) on Thalassemia and its effects. This way they would be gaining information as well as sharing this at an age when it is critical for people to be aware of the disorder.

If we can make this inetrantional at various age levels it would be a great and inexpensive way to get the information out. Any suggestion?
thanks
[Sammy

 

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