THALASSEMIA is a blood disorder is inherited in which the body makes an abnormal form or inadequate amount of haemoglobin.
Haemoglobin is the protein in red blood cells that carries oxygen. The disorder results in large numbers of red blood cells being destroyed, which leads to anaemia.
Thalassemia signs and symptoms can include:
Pale or yellowish skin.
Facial bone deformities.
DO'S AND DON’TS OF THALASSEMIA:
Drink tea with meals to decrease iron absorption
Non-transfused thalassemia intermedia patients are encouraged to avoid high-iron and iron-supplemented foods, and encouraged to drink tea with meals, which decreases iron absorption. Serum ferritin is evaluated in adolescents. Desferrioxamine is instituted early in the development of hemosiderosis. Iron overloaded individuals receive a liver biopsy. Early cardiac evaluation with Holter monitoring and stress ECHO cardiogram is done in individuals with significant hemosiderosis. In addition, folic acid deficiency appears to be more common in these individuals.
Low Iron Diet for the Chronically-Transfused Patient
Regular blood transfusions can lead to iron overload in the body. Extra iron from chronic transfusions is stored in the liver. Once the liver stores are full, the iron begins to accumulate in places like the heart and pituitary, where it can do damage. Iron overload can also result from increased absorption of iron from the gut, as can be the case with thalassemia intermedia.
To help keep the iron stores from building up too fast, a medication called Desferal will be used in conjunction with a low iron diet. Keep the iron under 10 mg/day for those children under 10 years old and under 18 mg/day for those who are 11 years old and older.
Children who have thalassemia and are transfused are still relatively anaemic, so their bodies might still crave iron. As it may be difficult to watch their diets closely, they should develop good habits early. Remind children to definitely avoid very high iron foods such as dried beef and other high iron beef products, even if they are craving it. Remember that the iron found in meat is much more easily absorbed than other sources of iron, such as cereals and breads.
Do not cook with cast iron cookware (e.g. a wok) because iron from the cookware can transfer onto the food. Some foods, such as orange juice, can enhance iron absorption, while others, like tea, dairy and coffee, can decrease absorption. If you are using Desferal, however, it is recommended that you take 250 mg or less of vitamin C after beginning infusion to help increase output of iron.
On food labels, the percentage of iron in one serving of that food is usually listed. This is based on the U.S. Recommended Daily Allowance of 18 mg/day. If the label says the food contains 8% of the daily recommended iron, multiply .08 by 18mg to get the mg iron from a serving of that food. Don't forget to check candy bars and snacks!
DIFFERENT TYPES OF THALASSEMIA
There are three main types of thalassemia (and four subtypes):
Betathalassemia, which includes the subtypes major and intermedia
Alpha thalassemia, which include the subtypes haemoglobin H and hydropsfetalis
All of these types and subtypes vary in symptoms and severity. The onset may also vary slightly.
ACCESSIBILITY AND ACCOMMODATIONS
Time Flexibility: A person may need adjustment in work timings, for treatment and related issues, which should be provided.
Extra Leave: A person may need extra leave (over and above what is entitled) for anaemia, pain crisis, infections, hospital visits etc.
Relaxation in Attendance: Schools and colleges should provide relaxation in attendance and should not prevent a student with blood disorders from writing exams if the student does not meet the required attendance. If a student is unable to write an exam on a particular day, she / he should be given re-examination on another day.
Extra time for exams and assignments (compensatory time): Some people may need to take breaks due to pain or other reasons related to their disability and hence may need extra time to complete their exam paper, which should be provided.
Financial assistance for the affected person/caregiver to meet the medical expenses.
Posting and Transfers: Since optimum treatment is available in select cities only, preference in posting should be given to person with blood disorders and their parents.
Inclusion in extracurricular activities: Some people may have difficulty participating in certain physical activities and they could be exempted. However, this should not lead to the student feeling left out. Some precautions can be taken in consultation with the person/parent, to make the activity safe for them. Inclusive extracurricular activities can also be planned.
Ensuring no bullying/harassment at school/college/workplace: Organizations/schools/colleges should create adequate awareness so that there is no stigma and there is inclusion in all aspects of school/college/work/ social life. There should be policies to ensure zero tolerance for bullying/harassment/discrimination.
In Karlamangala village of Magadi Taluk in Ramanagara District of Karnataka, Babu has Thalassmeia and goes to government school. The teacher visits his home or asks his cousin who is the student in the same school in higher class to help with home work. The teacher arranges games which Babu can play with other children and which are not strenuous. Former professional tennis player Pete Sampras is known to be a Thalassemia minor patient. Former professional football (soccer) player Zinedine Zidane is known to be a Thalassemia minor patient.Children with Thalassemia can perform all activities in a supportive environment.