Hi Toe,
There are many reasons to read the posts here regardless of where you live or what treatment is available where you live. I agree that things like bone marrow transplants are not relevant to everyone, but they are to some. This group tries to include all and to cover all issues. Not every post will be of interest to everyone, but at the same time, I do believe that every single person who comes here can find some value from this site. For example, you may say that screening of blood for disease is not being done before transfusion. But you are aware that is is highly recommended. Reading through these posts may increase your own understanding of why blood should be screened. In turn you can present this information to your doctor or health professionals and ask that this become a worthwhile goal. You can also show this site to your health care providers to help them also learn and understand about thalassemia. By even coming here and posting, you show that you have taken an interest yourself, and that is the first step. Please read as much as you can about the issues that are relevant to you. Educate yourself and use that knowledge to help educate other patients and the health care providers you depend on. You may find that even though many health care workers don't know much about thal, that they are often willing to learn and they, themselves don't know where to turn for information. You may be only one person but don't ever feel that you can't make a difference. I am also just one person, yet I feel my efforts have been of great value to many people, including doctors who have turned to our site for information and also just to understand how thals think and what issues are important to them. Please be stubborn and believe that you can and will make a difference. You will find that in ways you never imagined that you do make a difference.
Since I first became involved in this group, the differences in treatment around the world have screamed out to me. So many people in developed countries have no idea at all what treatment is or isn't in other places. I saw a great need to try to change this and have made great efforts to educate people about the need for improvement in treatment in the more undeveloped areas of the world. This was a primary reason why I chose India for the first conference I would attend. The problems in India are huge and only the more fortunate receive care. 80-90% of the thal babies born in India die without ever receiving any treatment! This is astounding! I wanted to bring attention to India and much to my surprise, I found that even within India, many thal patients who do get decent treatment are unaware of the problems confronting thals in their own country. I may be just one person, but because of my efforts many more people are now aware of the problems in India and some have even acted in their own ways to work to help thals on an individual level.
I have also traveled to the Maldives, where 18% of the population carry the thal gene and where, even though treatment has advanced dramatically, partly because thal has touched the lives of some in the government (Sajid is so right about this aspect...when thal touches those in government, suddenly efforts are made), but much is still needed in Maldives. But when you look back at Maldives you will find that most efforts have been made relatively recently. Do not be discouraged. Things can change quickly and dramatically and often all that is needed are some loud voiced to bring the problem to the attention of those who can help, whether it be on your own country, or the international organizations like WHO and TIF.
I will continue to help publicize and educate the world about thalassemia and the plight in undeveloped nations where care is very lacking. And I will encourage you and everyone else to help in this. Sometimes I feel like this
but I push on and keep working and when I see some results I feel like
Please don't ever feel that you are so alone. The more you tell us, the more we can offer advice and support and the more we know that your country is one that needs more attention. There is much information on this site that you can find value in and the volume of information just continues to grow. We are here to help and offer any support we can. I hope you will continue to both read and write posts and also encourage your local health care providers to learn more about thalassemia themselves.
Why should you read the posts? Read more of them and I think that question will find its answer. Ask about every single thing you don't understand. Learn everything you can. And then, do everything you can to make a difference in your own daughter's life. Make as much noise as you can if that's what it takes to get attention and help. Change will only happen when people speak up. The problems in southeast Asia regarding thal are tremendous and the need to create awareness is huge. But only by creating this awareness will change begin to take place. You need help from the international community and we will continue to publicize the needs of thals everywhere who need help. In our own small ways we will make a difference.