Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: zedzded on February 07, 2011, 12:56:29 AM
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Hi everyone, this is just a continuation of what Andy picked up on in Joes thread asking for advice about travel and transfusions. For those who have not read it, there were not many replies. There may be many reasons why this was the case but it highlights the need for us adult thalassaemics to get together more on these boards and share our experiences. It is tough being an adult thal, we have spent our whole lives learning to cope with the many difficulties our lives have dealt us, few of us will have had older thals to ask advice and sadly this doesnt change much for us now. Except that it has because we now have the internet and the ability to draw on a much wider network of friends spanning the whole world. I come from a town which has no thalassaemics and i do not attend a hospital which treats any either. It is very lonely and i often feel i do not have anyone to ask for advice other than my doctor.
As this is currently a very parent orientated board i would like to ask my fellow adults to help each other out, if we all tried to post more and share our experiences maybe we can make up for the past. As each generation has got older the knowledge and experiences have grown and what little was known when we were young is thankfully much more for the young now. I often feel very letdown that we continue to be the guinea pigs and in someways get left behind in the research and potential cures. It is hard coming to terms with the fact that much of the curative research will come too late to be of much benefit to us. I spent my whole life waiting for exjade and thankfully it came and we can now benefit from it. I am sad for the generations before us who did not get to see this breakthrough.
I have been put off posting for such a long time because I have often felt alienated as an adult. If we all make more of an effort to post together maybe we too will find some benefit and redress the balance between the older and younger generations
Anyway I will shut up now, but just wanted to get that off my chest x
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:clap Well Put.
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This is exactly it. Only thals themselves can tell you what it's really like to be a thal and only thals can tell you what works and what doesn't and how they manage things like transfusions and chelation and all those practical day-to-day issues that so many ask about. I think a lot of thals don't realize how much their life experience and perspective can be a benefit to others. It can so please share.
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I guess it can be of benefit to others, yes. But more than this, I think that each and every one of us finds his/her own path to walk and that depends on his/her background and education (or should I say personal culture?) , family, daily routine and daily standards, personal goals and way of living. I mean that we, on our own, really lay down the lines of our life. That's what I have always been thinking.
Lena
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Zedzded,
I totally agree with you,not only this sharing will help adult thals,but we as thal major's parents also learn a lot from your experiences,thanks a lot for bringing this up :hugfriend
Zaini.
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so , em back again :P .. ... :thumbup ...
Umair