Discussion Forums > Thalassemia Major

Dying inside....

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Alia:
Dear christine
After reading your  post ,i remember my own satuation.my daughter sara was 6 months old when the doctor told me they had to transfuse her.i was so shocked,i fell down from chair i was setting on. when the time came to transfuse her i was scared of looking at blood.all the way with her first blood transfusion i could not  stop criying.
after the blood they gave her she got her color back and she had more energy,that when i realised that this is what she needed.she is getting blood now from the last ten months.
i know that its hard for u right now but believe me u will get easier.
About the port,i have the same feeling as u. the doctors told me about hundred times but i said no.
At first  it was hard to find her vain for blood as her vains where too small.they had pok her saveral    time before they find any vain.she used was scream trough the whole process.she still doese but its much easeir to find her vain now.
i want u to know that i really feel for u. may got make this whole things easier on us.

§ãJ¡Ð ساجد:

--- Quote from: Canadian_Family on March 16, 2007, 03:46:09 PM ---our state of denail is so severe that except between the two of us nobody in my family, freinds or relatives knows about it. How we are keeping it secret like a holy grail. My parents visit us and stay with us they even don't know about it. We keep giving her desferal secretly when they are around.

I know there will be a day when things will come to open, at that point we have decided to refuse to discuss it further. We don't want any emotional stress on my daughter.
--- End quote ---

Hello Canadian Family,

I don't think this is such a good idea. I know it is hard to explain our condition to the "Layman" but treating your child so conservatively will have even more negative emotional stress on her than what you fear. She will think that she cannot live a normal life and has to remain hidden and keep a big dark secret from everyone in the world. She won't share the little joys with everyone else. As a matter of fact we should do the total opposite of this. We should give all Thals. a chance to live a normal life. You should expose your child's condition to everyone else and tell them that it is not a curse or something. We should educate everyone that with proper treatment this is not such a big deal. Tell her grandparents and all her friends/cousins etc that your child can live a perfect life even with Thal. and I'm sure they will love her no less than they already are.

Well, this is totally my opinion that we should not be so scared of other people for things that concerns only us how to handle our children. What I mean to say is that other people should not worry about what we are doing to our children as we know much better what is best for them.

I'm not criticizing you or telling you to what to do; you better know what environment you are facing and will decide the best for your child. This is just what I think and you need not necessarily agree to it.

Take care, Peace!

Danielle:
I agree with Sajid.  I think that concealing her illness will put a lot of stress on her.   :(

When I was younger, *I* didn't want anyone to know about my illness, because of a situation that happened to me when I was 6.  I was in a popular newspaper, here in New York, and they did a story on me about Cooley's Anemia and insurance issues. There was a HUGE picture of me in it, with my pump on.  When I went to school the next day, I was attacked with comments.  No one understood what Cooley's Anemia was, so everyone just kept saying that I had "cooties" and many of the kids parents wouldn't even let me hang out with them anymore.  So, I vowed not to tell anyone about it after I moved from the city.  My family always knew, from the time I was diagnosed, but I didn't want any of my friends to know anymore.

Anyway, when I had to conceal it, it was very hard on me.  I couldn't have sleep-overs, and I couldn't sleep over anyone else's house. Consequently, I ended up leaving my pump off a lot, just so that I could feel like a normal person, like everyone else that didn't need to use that darn thing.  I had to constantly make up stories as to why I wasn't in school when I got blood and other stuff.  It put a lot of stress on me.  I eventually ended up telling everyone, and explained in great detail what it is, and why I have it.  I realized that the only reason why I had a problem when I was a kid, is because all those ignorant parents didn't take the time to understand what Cooley's Anemia was, and didn't want to sit their kids down and explain it to them either.  It all has to do with education.  If those parents would have read about Cooley's, and realized that it's a GENETIC disorder, and not something contagious, maybe they wouldn't have made their children ignorant, too.

I know this is a long story, but I learned a lot from it.  I learned that my life now is MUCH easier, ever since I started telling everyone about my illness.  I started to tell a few close friends at first, but then after high school, I didn't mind who knew about it, as long as they UNDERSTOOD what it was all about. I even lectured about it a bunch of times while I was in college, because I knew more about it then my professors did.

I don't know what I would've done if my family didn't know that I have this illness, because they were always there for me, no matter what.  I don't think it would do any good for a child to have his/her illness concealed from their family.  It just decreases the amount of support that the child needs from their family to grow into an emotionally healthy individual.

This is entirely my opinion, and I wouldn't judge someone for something that I didn't agree with, so please do not think that I'm putting you down in any way.  I just think that it will make things harder.  If you are going to conceal the illness from people, I would at least tell your family about it.  You'd be amazed at how much more support you'd probably get.   :hugfriend

Andy Battaglia:
Obviously this issue is up to all parents to decide for themselves, and as someone who spends a good part of his life educating anyone I can about thalassemia, I do have hopes that we all will try to make an effort to educate others, which can help remove the stigma associated with the ignorance about this disorder. But I also understand that this varies from country to country and from culture to culture, so each individual has to make this judgment as to what they will tell others.

I would like to mention something that illustrates the contrast between hiding it and being open and accepting as something natural. Lisa was brought up to never hide her thal and was very open about it. She liked to tell the story about how when she first started school, she asked the other kids when they took their transfusions! She just assumed it was something all kids did. She didn't feel odd about it and never thought people would act differently towards her because of it. This is something we should all be striving for. I have been very involved with thals from the Maldives and unfortunately they are often confronted with backwards attitudes about it, which only adds to their struggle. People there still don't realize that thals can survive past their youth and say stupid things like what I was told this week. A mom of a pre-teen thal girl was told by the child's tutor that her daughter won't live long. I was stunned! This type of mis-information has no place in today's world and we need to do all we can to battle these wrong perceptions. Yes, thals still have not reached the average life span but they are living much longer and are normal, contributing members of society, and shouldn't be treated any differently because of a medical condition.

I encourage all to educate people at every opportunity. I understand that this isn't possible for everyone, but when it is, please do so as it can only help to improve the lot of others. 

Thanks.

Danielle:
I agree with Andy, and I'd also like to reiterate that I was not forcing my opinion on anyone.  I was just saying how hard is was for me when I concealed it, and gave some advice.  It's perfectly ok for everyone to have different opinions. :)

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