Nutrition for Chronically Transfused Patients

So, I have been missing do to the many life changing decisions. Initially I decided to go back to school for nursing but as a mother of two Thal children and watching other families with chronically transfused children not knowing or understanding the importance of a low-iron diet for their children has made me reconsider my career decision. Though I still haven't made my final decision between going into Bio-engineering and wanting to be there when the cure is available or nutrition for chronically transfused patients. Either way I will still fight for more information is available for hemo patients.
There is just not enough information available to patients and their families. Doctors do not emphasize the long term benefits of living on a low-iron diet, but also the immediate effects if they are not careful. Granted I am aware that there are laws that can prevent them from saying anything, but also there hasn't been enough focus on that subject. Luckily a nutritionist Dr. Ellen Fung from the Children's Hospital in Oakland has done a study of the importance of nutrition for Thalassemia patients and is now working on a study how to prevent or prolong the presence of osteoporosis in Thalassemia patients. Through her efforts in her conferences with Cooley's Anemia Foundation is great, but doctors need to get on board with passing on that information to their patients.
Though I love my kids doctor I was quite upset when the subject of nutrition was brought up and he felt there was no immediate need to focus on that, but he did agree it is a long term benefit. While in school this semester I was required to watch the movie "Super size Me" a documentary by Michael Spurlock. Michael was very healthy in the beginning of the documentary and he ate McDonald's 3 meals a day for 30 days by the end he was at risks for many diseases. An individual  who should be on a low iron diet and yet is unaware of that, may over eat items that are bad for their condition and can have present results that can be fatal. There does need to be more studies and education available. As a diabetic needs to stay clear of a certain amount of carbohydrates, as should a chronic blood transfused person should know their limit of rich iron foods. Doesn't mean they cannot eat anything that is rich in iron but to know how to manage their diet. With my two children I have been teaching them to eat healthy home made foods and the benefits of eating at home, but also how to make better choices when they are faced with eating out. Which items are low iron and how to substitute and still feel they ate well without hurting themselves. If every parent was taught these aspects when they found out their child is chronically anemic and taught them from a young age, when they become adults they would have better chances of living longer lives. Eating well, benefits all people, but when a a disorder is present there should education available of the benefits.
If you want more information about foods to limit please contact me.