Discussion Forums > Thalassemia Major
Question for Andy...
Lena:
Andy,
I have been dealing with thalassemia my whole life and because I am analytical by nature, I do not leave anything at random. I always search and study things as a third party and there have been many times when I try to stay outside myself and examine things--observe myself and my reactions.
Being a thal, justifies my knowledge - if any - and my tactics concerning my treatment.
I have never,though, met someone like you: So well informed,inspite of not being a thal and not being a doctor. So what I am saying, I trully believe. Only committment can justify the great job you have done with this site and this is something for us to respect. I know I do.
Lena.
Emby:
I would say its more than 100% commitment from Andy...it is a whole lifetimes commitment..and that speaks volumes!!.....words alone cannot express what you feel when you come across such a genuine person such as Andy.......thank you for simply just being there...thank you for your precious time....and thank you for your deeply valued knowledge...
Andy....that is something to definately look into.....you say 'as they move into adulthood' what should we look out for?
Andy Battaglia:
Emby,
When I talk about them becoming adults, I am referring to them becoming more and more responsible for their own treatment regimen. The managed structure found with the comprehensive care programs has proven to be extremely important to adult patients who naturally move from full parental involvement to responsibility on their own. In some ways, the comprehensive programs take over for the parent to make sure that all aspects of treatment from transfusions and chelation to the annual tests, scans and evaluations and also the psychological and emotional aspects of treatment are maintained. Without this direction, young adults often slip on compliance and run into problems by age 30. One of the most touching moments at the recent conference in NYC was when two adult women with thalassemia talked about what is necessary for adult patients. The importance of their comprehensive thal centers to these women was well expressed and their request for more adult centers was a real eye opener. Adult thals, if given the choice, will chose adult centers, and the women lamented how little access to adult facilities currently exist. One thing they stressed was how important the thal centers are for the patients and they also pointed out that it isn't just the patients that have to change. It is the centers themselves, that also need to evolve to include both underage and adult patients. With the advancements in thal care, the need for creation of thal centers for adults has become much more apparent and what we are currently seeing is adult patients being treated in adolescent settings. The need for adult centers is obvious to the adult thals of today but their development has lagged. As your sons move towards this age, you should see a correction as we see more adult centers established with more expertise on the problems of aging thals, which are often quite different from the problems of younger thals. All parents are proud to see their children become adults and forge lives of their own. Parents of thals have not had this experience until more recent years, and to achieve this maturity in their children, it is necessary to begin the transition as teens. The comprehensive approach makes it much easier for this to occur as the young adult becomes the person with primary responsibility for his or her own care. In some ways, the center takes over for the parent to make sure the patients stay in full compliance.
There are many issues that confront thals as they grow and giving them the tools to become independent adults is essential to ensure the mental and physical health of those with thal as they become adults. The comprehensive approach to care will ensure that this can happen for every patient.
Emby:
i feel the biggest thing for us as parents is to get the boys to be more aware and in control of the thal and to keep themselves well informed especially as they are getting older i would like them to take the thal into their own hands with us supporting them all the way.
[quote from previous post]
I thank God our boys have always been compliant with all forms of their treatment....and I hope, God Willing, they continue this way....
nice friend:
Hi Emby Sis,
i hope that ur sons are doing fine... wishing them lots of luck n best of everything :) ..
Best Regards
Take Care
Umair
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version