Thalassemia Patients and Friends

Discussion Forums => Greetings => Topic started by: Andy Battaglia on May 08, 2013, 01:44:41 AM

Title: World Thalassemia Day and Beyond.
Post by: Andy Battaglia on May 08, 2013, 01:44:41 AM
Today, May 8 is World Thalassemia Day and I would like to wish everyone a very good day and a very good life.

Today we celebrate, but tomorrow what happens? Do we go back to our lives with nothing changed or do we go back with a determination to make the necessary changes?

"The right for quality health care for every patient with thalassemia, major and beyond,"

We see this slogan often these days and it is a wonderful idea, but it has to become a reality and not just a pleasant saying, and those entrusted to make it so, must understand that it has to be more than meetings and parties. It has to be the day to day hard work that is needed if this idea is to ever become reality.

We can have nice slogans that support a patient's right to care, but why at the same time are some of those using this slogan not also defending the rights of patients to full access to all information about their disorder and its current and potential treatments? Why are patients being denied access to scientific programs at international thalassemia conferences? Surely, we are not expected to treat patients and families with a patronizing attitude that basically says "we will always treat you like a child. We will never acknowledge that you have just as much, if not more right to information about thalassemia as any doctor or researcher." How can true progress move efficiently forward when the very reason the conferences exist, the patients, are denied access to information? How can anyone claiming to represent thalassemics be so arrogant as to even consider this policy, let alone make it THE policy?

I feel we have a long way to go. We have a nice catchy slogan but what is being done to help patients right now? Is there an international directory of thal centers and thal doctors available to the public, so that the most basic task of referrals can be accomplished? No. Is there an international organization delivering needed chelators and supplies like good quality thumbtack needles and blood filters to patients who cannot afford them? No. Is counseling help available to parents and patients to help them deal with the many obstacles that appear in their paths? No. The list goes on. As one man with very little funding, I have accomplished many of these tasks on an individual scale. It is possible and an international organization should be able to accomplish far more than one person.

In the U.S. we have a tremendous asset in the Cooley's Anemia Foundation. Their only limits come from the limits of funding. This model should be used internationally and duplicated everywhere it is needed. It is not too much to ask that parents and patients everywhere have access to an organization that can at the very least, direct them to the doctors and hospitals that can help them. When a parent from Calcutta or Kabul or Ho Chi Minh City tells us they don't know where to go to help their infant with thalassemia, we should be able to say more than we don't know what to tell you. When a patient asks where to go to find needles, we should be able to answer that patient, and perhaps help the patient acquire them. It is not too much to ask that we change things today.

On the international scale will we dedicate ourselves to these goals that are needed here today, or will we concentrate on grand goals while ignoring the individuals? Will we say the scope is so large that we help very few in the end or will we make real efforts to make sure we drop our parochial views and see the world that really exists? Will we acknowledge the immense scope of the thalassemia problem in Asia and attack it, or continue to mostly ignore  the needs of the very poor whose thal children still die at very young ages?

How do we proceed? On what will we base our decisions? Is the international effort only for a chosen few or is to be for every single thal on earth, as reads the slogan? At present, it's no more than a slogan. Health care should be a basic human right for all people and not only for those who have been smiled upon by life. Are we all willing to do the hard work or are we more interested in "what's in it for me?" and that includes those in the medical field? Is about yourself or is it about a larger goal? How will you proceed?
Title: Re: World Thalassemia Day and Beyond.
Post by: Pratik on May 08, 2013, 10:19:52 AM
Truly aspiring post. I also agree on the fact that it has to be more than just partying. What's the use if we as patients are not allowed to take part in the conferences? We're the sufferers, we're the patients, and we need medicines and cure than why in the world at the end of the day deny us from joining?

Or it is still the fact that thal majors are always considered little children without any knowledge?

Anyway, it feels great on this day, May 08. The sun is shining at it's full and indicating that there will be a fruitful morning soon, living the life in the same hope everyday.

Title: Re: World Thalassemia Day and Beyond.
Post by: JV on May 09, 2013, 02:06:20 AM
Great post Andy, thank you. To all the parents and patients...keep fighting!
Title: Re: World Thalassemia Day and Beyond.
Post by: Annoushka on May 27, 2015, 09:05:51 PM
Hello Andy
I joined this group yesterday, it was in fact my baby brother (51) who sent me the link which I must admit glad this exists.  Taz is  his profile name, he was kind enough to also send me the nutritional info, where I went to buy some of the tablets, Vitamins, I now tend to eat for a while  wholesome foods, meat, fresh veg, and fruit, and cook with coconut oils and nut oil for salad dressings. I never ever buy processed foods or ready made meals as one never really knows what the true composition is.... No not paranoid just like to know what I am eating.
I did have a coach for fitness and diet. I also make sure that I walk at least 7 km a day if not more. so any other tips you may have would be great and thanks for existing.....
Title: Re: World Thalassemia Day and Beyond.
Post by: Andy Battaglia on May 29, 2015, 12:00:11 AM
Nice to meet you, Annoushka. I think you are doing very good. We should all want to know what we're putting in our bodies and we should all have a goal of concentrating on a nutritious diet, as it is so important to everyone, thal or not. My only suggestion is that you take some time and read some of the posts concerning diet and nutrition and make sure you aren't missing anything. A good diet can go a long way towards keeping one healthy, so you are already on the right path.