This is an interesting topic that has been brought up previously. I would like to note that in our current discussion, it seems that more people are willing to be open about their thal, and I think this is a good trend. Although one's health it is not anyone else's business, when it does come up, if at all possible, people should try to be open about thal, as the opportunities to educate and create awareness about hemoglobin disorders, should be exploited. Only by creating awareness of these widespread disorders, will we be able to help prevent them from happening and also get the necessary attention to attract the interest and funding necessary.
Lisa was very open about her thal and never tried to hide it. As a young child in school, she asked other students when they got transfused, as thal was the norm for her and she thought everyone must be getting blood. Everyone knew about her thal and no one thought the worse of her for it. When she became seriously ill, her employer, the Rochester Police Department, through the efforts of our now Mayor, Robert Duffy, made sure that Lisa continued to receive her pay once she could no longer work. This would not have been possible if Lisa had hid her illness.
However, I need to point out that not all cultures are so accepting and in many cases, hiding one's thal may mean improving chances for education and employment. It was not long ago that we had a discussion about the "stigma" which is what thal is sometimes called, and we learned that in many places, this "stigma" is still very much alive and causes great problems to thals. In these situations, it may be prudent to keep one's thal private as much as possible, even when trying to create awareness. Each parent or patient must weigh the different factors involved before announcing that one is thal. What might be fine in Chicago may create ostracizing in a less accepting culture. Our goal, of course, is to create a world where anyone can openly reveal any medical condition without fear.