Thalassemia Patients and Friends
Discussion Forums => Miscellaneous Questions => Topic started by: Eponine on December 08, 2007, 04:51:01 PM
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Hi Guys
Would like to find out the topics of interest to a thal which you would like to see in the international conference.
Am in the misdt of drawing up the patients and parents segment and would really appreciate some ideas. It can be topics that have already been discussed here or not at all.
Looking forward to your responses... :biggrin
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One of the topics that were not much discussed in conferences is the effect of biological treatments on thalassemia. Also topics concerning Hb f induction and chelation are always interesting. Finally and above all of course how far has gene therapy reached
Manal
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Hi,
I agree with Manal and plus for the patients and parent segments I would like to discuss the issues dealing with the trauma of treatment for both patients and parent when they have to confront the visit to the hospital and Desferal.
How can we make the experience easy and what psychological manipulations people should follow to make it less traumatic?
I hope you get it. Sometimes even I don't know what I am saying :huh :biggrin
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no sajid that was nicely put..i would say the same pretty much. along with what manal said about the more scientific advances, i would also like to hear of the psychological issues thals and parents face..it's not talked about too much in professional settings, and i would like to see a discussion on that. :smiley
some topics i can think of right now would be:
'growing up with the stigmas that thal has'
'over-protectiveness of others on thal, or thal on themselves'
those are just 2 i can think of quickly right now..but i'm sure once a dicussion gets going other details pertaining this matter will get thrown in there.
thanks for your time eponine! :smileblue
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The thing i'd like to be discussed is the behaviour of people towards thal patients, in country like mine where there is a lack of awareness about thal, people still think of thal as a fatal disease rather then a manageable disorder,thal patients don't need sympathies or pity, what they really need is encouragement and appreciation,the confidence that they can do anything in the world,thal can't stop them, and it won't stop them if they have the encouragement and appreciation of people with them, and not just the family but everyone, people should know that thals are not freaks, they are as normal as anyone, yes they have a medical condition,but it can't and it should not effect their personality, a person should not be known by the medical condition he or she has, but by the abilities and talent they show.
That's what i want people to understand, i am NOT ashamed of my daughter, i am PROUD of her, i always treat her as a normal kid,and i always tell her that i want her to become a heamotologist, so that she can help people suffering from thal and she'd be able to understand their problems more clearly then any other heamotologist,and she could be an inspiration to them all.I hope my prayers will come true.
ZAINI.
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aw Zaini! your so cute i wanna wrap you up in a bundle! :)
but sad to say, in a world where just physical appearance itself is judged, critiqued, etched, made-fun of, covered up for that matter, or valued for its 'popular' assesment standards...
people wont really adhere to an 'easy going attitude' for any disease.
but i do believe that that is not everyone. and those that see what you see zaini, even if it is 1 out of 10..will show your daughter as well as others what it means, with the deepest sincerity, to be connected on a level where everything is equal and peaceful..no differences, no reasoning, just love. to me, the world should know this already.
~from me to you :heartred
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Thanx red,:)
I'd never allow my daughter to feel self pity,i want her to be strong,bcoz i know world outside is brutal ,i want her to be ready for the battle of life.
ZAINI.
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:heartpink
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One of the topics that were not much discussed in conferences is the effect of biological treatments on thalassemia. Also topics concerning Hb f induction and chelation are always interesting.
Hi Manal
What do you mean by biological treatment on thalassaemia? And also, what about Hb f induction?
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Hi Eponine
I meant medicines that contain biological cells from other animals ( i discussed this in one of the posts)
http://www.thalassemiapatientsandfriends.com/index.php?topic=1238.0
I meant by Hb f induction: the natural things that can induce the production of fetal HB like resveratrol, butyrates, .... or medicines like hydrea and i heard too of a new medicine that will induce HB f production, but its trails will start this year in the US, i guess this is related to Oakland hospital if i am not mistaken. I will try to remember the name and post it.
Manal
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Eponine,
I would like to see something talked about at the conference that doctors and researchers never seem to talk about or even acknowledge. The health problems of thal minors, especially as they age, are basically ignored. Is there anyone who can address this at the conference? The problems thal minors face, while nowhere as serious as those of majors, do create significant quality of life issues and add to other health problems in general. Can we find anyone to address these issues?
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Keeping in mind the thought presented by Andy, I would like to see somebody talking more seriuosly about thal minor as it is the root cause of thal major. Ignoring thal minor means underscoring the probability of thal major.
I am talking with experience here, my thal minor was brushed aside by my doctor 7 years ago, had he took it seriously, educate me and my wife and its effects on our life than things may had been different.
Regards
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I am talking with experience here, my thal minor was brushed aside by my doctor 7 years ago, had he took it seriously, educate me and my wife and its effects on our life than things may had been different.
:sadyup :sadyup :sadyup :sadyup :sadyup :sadyup :sadyup :sadyup
Manal
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That is just wrong!!!!!! See that's the problem with doctors they just don't seem to pay attention! I swear we have to manage our own health care in order to ensure we are recieving the best possible care,youneed to stay informed and keep ourself educated! I don't know but always thought that was the doctors job right isn't that hwy they get paid all the money? Seriously ther have been several times in my years that if either I or my mother hadn't spoken up or known what was going on who knows where i'd be!!!!!! (sry for the rant)
But hopefully you are seeing a new dr now and know that everything happens for a reason and all we can do is learn from our mistakes. I am glad that you atleast found the site now n we can all be here for eachother.
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I hear you Andy. Our scientific program includes Alpah Thalassaemia and Thalassaemia Intermmedia / HbE.
As for the parent/patient program, its still in the midst of planning.
There are many around the region here as well so we will try as much as possible to put all in in the short 3 days of the conference here.
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I would like them to talk about the possibility of pairing the L1 with exjade. Also it would be great if they can actually visit the possibility of ensuring that the standard of care internationally is equal and that the patients are all benefiting from proper care.
A website dedicated to patients should also be offered by TIF with a person assigned to offering advice on a full time basis to deal with the varying hours internationally.
A magic wand to get rid of our problem would be the ideal thing as well. :biggrin
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A website dedicated to patients should also be offered by TIF with a person assigned to offering advice on a full time basis to deal with the varying hours internationally.
Hi,
I think that the members here are doing a better job than TIF can ever do in this regard; don't you think?
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Sajid,
I do agree but I think that if TIF is our main body representing us then they should also provide a FAIR and unbiased basic service to everyone. Dont you agree?
To date I have had the experience of being treated in three different countries and my experiences have all been different. In some cases I feel the care offered is not what is best for us but what is available. Having an active main body representing us should ensure that basic guidelines are mandatory for each country.
assistance should also be provided for each country in order to maintain the level of treatment. You shouldnt be playing russian roulette for your provision of medication, dont you agree?
:huh
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Hi Eponine
I'm Sylvia from FerriScan : non invasive measurement of liver iron concentration.
Let you know if you are interested to touch based on managing chelation. FerriScan is often used by hematologists to manage the chelation's dosage. By knowing the amount of iron stored in the liver, hematologists can work out the best chelation based on what the body needs.
Our Chief Scientific Officer who is also one of the founders of FerriScan, Dr Tim St Pierre, would be attending this conference. Maybe he could give a talk or something similar? Let me know your thoughts.
Hope to hear from you soon.