Our recent discussion about the famous photo of a young child getting blood, the "Tied for Life" photo, has made me realize the importance of our initial responses to parents of young thals, and how we can attempt to alter the perception and view that those new members have from their first contact with our group. I believe that we have the opportunity to set a positive tone by our responses. We have seen that Tied for Life can be seen as both positive and negative, depending on one's view, and I think we can do much good if we try to set that tone as positive from the very first moment a new parent comes to our group. We have heard that the image of a young child tied to transfusion is a harsh image, but we have also seen patients who tell us that image is a symbol of life, as it is the transfusion that allows thals to live a fairly normal life. That baby in the picture is now a 17 year old boy on the verge of adulthood. When you see it from that perspective, you can easily see why it is an image of hope.
Treatment for thalassemia has changed drastically over the past few decades. Where it was once classified as a fatal disorder, it is now classified as a manageable chronic condition. Thalassemia is the only genetically based disorder where such a remarkable change has taken place. We need to approach new members with this view. We need to set the tone right from the beginning that thal is something to be dealt with and when properly dealt with, the thal patient can have a long normal life. This is no exaggeration. Chris and Andy from UK will both turn 50 this year. Maako, Akka and Waqas have all been married in the past year or so. Kat has two kids, is active in the organizations and is a full time student in medical school. The examples go on and on. Education, careers, marriage and even children are all realities for thals who get proper treatment and comply with that treatment.
The attitude of parents has so much to do with the success of the children. Let's work from the very first moment to adjust those attitudes in a positive manner so that parents can move forward with the strength and confidence that can guide them as they raise their children. Let's show them how much things have changed and will continue to change. Let's help them start with a good attitude and maintain that good attitude. Right from our first words. we need to be conscious of how what we say, can set the tone for how that parent will view thalassemia. If we succeed, we can change the lives of many thals in a truly positive way.