Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: zahra on January 19, 2015, 08:03:02 PM
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Hi everybody,
My son is now 6 and a half years old and has started asking about his disease. I'm not sure how to answer them while keeping him positive.
Example questions:
How many transfusions have I had?
How many has my friend had?
You've had transfusion too. Why don't you have to have exjade?
Don't they have any other medicine I can take instead of exjade?
Why do I have to have transfusions? The blood scares me but I don't reveal it. It makes me want to cry.
Any advice would be appreciated.
Zahra
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Dear Zahra,
A few of us had this conversation a few years ago. Please find our conversation in the link below:
http://www.thalassemiapatientsandfriends.com/index.php/topic,2208.0/highlight,sharmin+everyone.html
I hope you find our ideas helpful. It is a good idea to speak with your child about thalassemia and to teach them to be their own advocates early in life. You can start small - telling him as much as he can understand and continue to be positive with. Always tell him in the context of "everyone has some challenges and this is one of yours". And tell him all of the good things that come as a result of thalassemia "the fun day at the hospital where he gets to spend the day with mom or dad and getting spoiled by nurses". It helps if we believe what we say - and for that we need to find the positives ourselves.
My best to you and your son,
Sharmin
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Dear Sharmin,
Thank you for sharing the link. It is very useful. The idea of children taking responsibility for their own care is ideal. I hope to get there but fear I won't. I have 2 teenage kids and getting them to take responsibility for their medication for asthma is a challenge even when the discomfort caused by the asthma is obvious. I hope and pray my youngest will be responsible in both transfusing and chelating when he is older.
Zahra