Life Stages

Most families find out about their child's diagnosis shortly after birth. Even for families who may be familiar with thalassemia, it can be a difficult time. Adapting to a new diagnosis can be challenging. You will be lots of new information and meeting lots of new health care. Expect your child to achieve normal developmental milestones.

What you can do:

1. Use your support network. Talk with family and friends that are useful in the past. You may even in part of your support network to bring when you see the doctor. If you have someone with your child's illness do not know, think about asking your doctor's office to set to a different family.

2. It is good to ask questions and to more than once to ask. Try to pay attention to how you manage information, some families prefer to provide information in writing, some families prefer less information at once to hear. If you know your favorite, share it with your health care.

3. Take care of yourself. Your ability to care for your child directly related to how you do. Take time to relax, take part in fun activities and enjoy the new family member.

Children at this age is the test of their environment that they can do and test their parents for what they are allowed to do. Children are unable to fully understand why they need to go to the hospital, and why the things that are uncomfortable to have them (needle sticks, examinations). You can find increased resistance to invasive procedures like blood transfusions or draw. If your child is on chronic transfusions, you can start using Desferal during this time at home. It can be hard to make your own child to love, both physically and emotionally.
If your child attends daycare, you will need to think about the kind of information you feel comfortable sharing about your child's illness.

What you can do:

   1. Medical play can help your child to medical procedures to master. Have a child life specialist in psychosocial provider or hospital in your work with your child for medical game. It can also be useful to a toy medical bag at the house.

   2. During procedures or IV to help your child manage stress by distracting them with books, songs toys.

   3. Talk with your health care over what you share with daycare centers, babysitters, etc..

   4. Continue Age appropriate behavior from your child to expect and fear not set limits.

School Years

Children during this year they look for good in math, reading, sports, arts, help around the house, etc.. The need for a sense of mastery also extends to a child's illness. Children will want more control over the procedures and have many more questions about why the procedures and tests done. School children are more to look at their peers to determine their competency in the academic and social arenas. Children will begin to notice things that their peers do not come to the hospital, as they do and ask questions about this. As children get older, their cognitive development change, and they have a different understanding of themselves and their environment. You can ask the same questions many times.

What you can do:

   1. Help your child something they are good to encourage their interests.

   2. Try to make your child more choices, and thus control over their medical care. For example, give your child a choice about where the IV should be placed.

   3. Listen and take seriously your child's questions about their illness and medical care. Answer questions as clearly and honestly as you can. If you are unsure of the answer or how to best talk to your child about an issue, talk with your health care provider.


Many parents and patients say the teens are the most difficult time for families. Families struggling with the shift of responsibility and control over the illness, academic progress, and social activities. If teens more responsible for their illness, the fulfillment of a problem. Teens spend less time at home, more oriented toward their peers and are motivated to be like their peers. All these factors can lead to non-compliant behavior. Adolescents begin to think more like adults and adult concepts of disease and death to understand. While teenagers can cognitively understand abstract concepts, many feel protected from adverse effects that can lead to risk behaviors, including experimenting with drugs and alcohol, sexual and aggressive behavior.

What you can do as a parent:

    1. Continue to negotiate with your child responsibility for disease.

    2. Let your teen start independent relationships with his or her health care, it can help you negotiate the transfer of care to your child and give him / her a private and safe place for any concerns.

    3. Get information and support from other parents going through this difficult time.

    4. Not hesitate to ask your family to meet with a psychosocial provider to help this year to manage.


The responsibilities of adult life can get even more complicated in the presence of a chronic disease. Adults face the challenge of maintaining relationships, work, medical insurance and the management of an often complex medical illness. For some, the attainment of maturity means a change in their system of medical care from a pediatric environment to an adult institution. Compliance with medical management remains a problem as patients balance the issues of the use of invasive medical procedures and the quality of life. Please read Proposal: Life as an adult in Pediatric World in our patient Forum Section