Thalassemia and Depression

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Offline Zaini

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Re: Thalassemia and Depression
« Reply #15 on: November 08, 2008, 07:03:01 AM »
Dore,

I am really sorry for what you've been through,life is very unfair sometimes,but we are human beings and we have to make the best we can,and don't worry,the friends you lost,weren't really your friends,because if a friend of mine is feeling lonely ,i'd want to be there for her,i won't leave her,even if she is trying to ignore me,so it's not you,it' them.
We can have our differences with our parents,there is nothing bad in that,they and you both are human beings,i know it's hard to believe sometimes,but they love us,it's just that sometimes they are unable to express.
You are a very sweet person,i,ve never met you,but i can sense it,just believe in your self,you'll make better friends who'll stay with you forever.

And remember,we all are here for you.

Love always  :hugfriend

Zaini.
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Offline Dori

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Re: Thalassemia and Depression
« Reply #16 on: November 09, 2008, 12:18:57 PM »
Thank you for your kind words, Zaini :)

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Offline Sharmin

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Re: Thalassemia and Depression
« Reply #17 on: September 25, 2009, 12:32:00 PM »
Has anyone here taken anti depressants or anti anxiety medication?  Would you kindly share your experiences with depression or anxiety and whether the medications made any difference?  What else is helpful?  Cognitive, behavioral therapy etc?

Thank you all for sharing your thoughts,

Sharmin
Sharmin

Re: Thalassemia and Depression
« Reply #18 on: September 25, 2009, 01:18:14 PM »
Sharmin,

I seriously think that the question of anti depressents is not for yourself, atleast for a stronger person like you. Is this question related to denial of exjade for Little Mr. A, sorry if I have made a wrong assumption here.
Regards.

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Offline Sharmin

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Re: Thalassemia and Depression
« Reply #19 on: September 25, 2009, 04:05:51 PM »
Hi Canadian Family,

Actually I was exploring ideas for thal major patients who face depression and anxiety especially during the teenage years.  Many young thals will face these issues - so I thought I would give the older thals a chance to share their experiences with medications versus other types of therapy in order to prepare the younger patients if they ever feel sad or anxious.

I am disappointed about the exjade issue, but not to that extent  :wink  I am going to keep working on it :)

Thanks again for your concern and wonderful advise  :hugfriend

Sharmin
Sharmin

Re: Thalassemia and Depression
« Reply #20 on: September 25, 2009, 05:06:38 PM »
 :biggrin
Regards.

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Offline Andy Battaglia

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Re: Thalassemia and Depression
« Reply #21 on: September 25, 2009, 06:37:13 PM »
It would be very helpful if some of the adult patients could give us some input on this topic. Adolescence can be very difficult for thals as they learn more about thalassemia and its implications. Of course, this can be made even worse if teens are exposed to old information that gives a poor prognosis for thalassemics. I want to ask that some of our members who have gone through these years to give us some insight in how to recognize and deal with these problems as they arise. This would be of great help to both patients and the parents who may become distraught trying to deal with the changes they see in their children. As always, I think our group can be leaders in this and also be very effective. I am sure everyone realizes how many parents of young children are members of this group and as their kids grow, these problems will become more evident. Let's do what we can to help everyone make it through thse difficult years.
Andy

All we are saying is give thals a chance.

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Kathy11

Re: Thalassemia and Depression
« Reply #22 on: September 25, 2009, 11:33:46 PM »
I have suffer and still suffer from depression and it has been, for most of my life and was not diagnosed untill my mid forties.
The physchiatrist still is trying to pin a name on my condition,Ive told  that I have different kind of disorders,and yet  I function and articulate appropriately in all my doing.I abide to all so call society, mores , rules and expectations,  never committ and crimes :rotfl :rotfl :rotfl raised a family and my children are a successfull in their chosen field.It was hard but I did it to the best of my ability.yes mostly on my own because of my depression, it was hard to maintained a relationship and my husband left with another woman I still managed to cope.

I took anti-depressants for appoximately three years and to my experience, it did not help, just rendered me in a stupor.and prevent me from functioning effectively, with my daily living activities.(I hate being like a robot). :(

I find out that by taking folic acid and eating the right diet thats includes  fresh vegetables and fruits,  non process food ,fresh fish, low fat, low sugar ,low salt, and maintain an acceptable blood glucose level , seems to help.some exercise can help too, I do as much as I can tolerate.
Having said that  I still struggles at times with my moods.

I found that is also help to have a good outlook of life, even at the worst time. Over the years I have learnt to accept what I cannot change and live with my life the ways it is.
I believe that each individual needs to learn how their body function and work with it.
Thanks to my good friends that see me through my down times I'm gratefull to them.


There are no quick fix to depression, no magic medications, I believe that medication makes an individual worst that is because that person has to cope with the side effect
It is not easy still we are all here and we have to make the most of our time on this planet

I wish to tell everyone that is suffering  from depression the main thing is NOT TO GIVE UP  , is the key to living a reasonable life   good luck
Kathy



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Offline nice friend

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Re: Thalassemia and Depression
« Reply #23 on: September 26, 2009, 11:55:11 AM »
Hi ya all,
dont b sad or feel depressed bcoze of anything .. just say thanx to  GOD that he made and blessed you with everything , dont cry for the onething ( this diseas ) try to laugh for the many things HE gave to you ... worries , tensions and this kind of stuff is the a part of life, its a pinch to our body to make us feel that we r alive , without these pinches  life will have no more reason to live and to strugle for .... i have alot to write under this toopic and i will keep writing under it, ... b sure i m always here for you all ... :)

Best REgards
Take Care
Umair
« Last Edit: September 28, 2009, 09:36:07 AM by nice friend »
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Manal

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Re: Thalassemia and Depression
« Reply #24 on: September 26, 2009, 04:24:38 PM »
From my limited expierence with non thal people who take anti-depressants, i observed that they do no good. Either they continue with their depression or continue being dependent on these medication with all their side effects.

Depression is usually a symptom of a ''problem'' one suffers or can not deal with. Usually i can see that both doctors and patients tend to concentrate more on dealing with the ''symptom'' rather than the ''problem''. I am not generalising here because i know that sometimes depression is a result of imbalance in some chemicals of the brain and in this case medication is a must.

From my point of view i believe that depression in thal teens should be addressed with behavioral therapy teaching them how to cope and face challenges rather than medication or at least limited usage of medication. We don't need to end up with teens depenant on anti-depressants.

As parents of children, i believe that our target is to work on preventing depression in the first place rather than how to deal with it. I know that it is not that easy and we have many challenges and i know too that such situations have many sides to deal with but i am speaking about a target  that each parent must work hard to reach because we are AWARE and that what makes all the difference.

I believe that the way we raise our children and our ability to ''neutralize'' their life with thalassemia is the way out. And this does not start at the age of adolesence, but rather earlier in childhood.

I do believe so much from my expierence with my children, that parents can ''brain wash'' their children with whatever ideas, believes, style of living at an early age. The important part here is the timing or when to start before it is too late. Any thing in the world has two sides, the good and the bad and the good side of thal is how to make it part of a child life rather than a problem in his life.

Maybe i sound too optimistic since i am not in the shoe of a parent dealing with thal teen but at least this is how i think is the way out. This will put a lot of stress on parents because they will be always searching and making sure everything is going well and above all ''wearing the face of everything is going well with a big smile''. I know how hard this will be cause many parents are already having many intervals of anxiety and depression themselves because many times in our lives while dealing with thal, we end up waiting for the unknown or problems keep pumping up every now.

I am not sure if i have discussed this before or not, but more than a year ago my son had ''depression'' , i am sure that children have their depression too. He was rejecting being obliged to take his supplements or to be poked with needles for his monthly check ups ... he simply hated the routine.

At that time i actually reacted very coldly (which is usually not common for me in such situations) and i simply told him okay don't take any thing anymore and actually i did for a couple of days. The third day i started talking with him about the concept of ''consequence'' in general. I told him that the quality of one's life is a consequence of one's doing. I gave him million of examples that he can grasp like consequence of studing, eating ,lieing, behaving ....things he can understand and that their is always bad and good consequence and he has to choose and be responsible for the bad/good consequence.
Then it pumped in my mind later to get a scarf and wrap it aound his eyes for an hour (i started it like a game) he kept falling and hitting everything around him in his own room ( he had a lot of bruises that day ) and at the end i just told him in simple words (after expermenting in a practicle way) which is better monthly FOREVER pokes or dealing with the inability to see. He laughed and laughed and told me '' no i prefer needles, i love them :rotfl'' From this day, we have no problem about the needles any more. I know it is not the end of it and with days other things will appear again

My son does not  understand the word thal yet, but he knows one fact.. that his body is different than his sister and he needs different things than his sister needs. I am raising him on the concept of ''difference'' rather than the concept of the ''disease''.I stopped telling sympathysing words to  him when he gets hurt once from the needle or when any of his medications taste bad because sometimes our words or looks for our children makes them feel ''sorry'' for themselves. 

Now i would rather tell him how to deal with a bad taste (by closing his nose for example) and that we will not spend our day nagging and complaining from a bad taste cause we have alot of other activities to do in life and we would not be smart staying all day talking about a ''taste''

Now i would tell him when he is sometimes get hurt from a needle, that this is a normal thing and it could happen and the pain is temporary and is nothing compared to the pain he has when his knees get wounded while playing football.

I just don't want to make him feel sorry for himself or see this look in my eyes

Too long post :biggrin, but i know this subject will not end because as life goes on we will all face different situations  in this so sensitive area

take care
manal

 

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Offline Lena

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Re: Thalassemia and Depression
« Reply #25 on: September 26, 2009, 05:04:26 PM »
Congratulations Manal,

I agree with every word you said. I was raised in a much more difficult time than today-in fact I envy young thals as life is much more easier for them with the conditions of today-but my mother and father were wise enough not to make me feel sorry for myself on everything. Imagine that when I went for a transfusion to the hospital, my mother kept me apart from other mothers who talked pessimistically about their children. She didn't want me to listen to their conversations about their children who were "going to die and they didn't have much future ahead of them."
At the age of sixteen I remember myself going through a big crisis. I cried and cried and asked why this happened to me. I did all that crying alone, on my own in my bed at night and kept it all from my parents. They never knew anything, that was my secret. However, because they had raised me correctly and made me strong I overcame with it, without any medication, antidepressants and all, totally again on my own and that never happened again until today. But I remember this crisis very clearly and now I can classify it as adolescent depression.
So I think how you put it, the way you use with Ahmad, is correct. Make your children feel strong, happy with themselves, coping with thal,find meaning and interest in life and everything will turn out well.

Lena.

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Offline Manal

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Re: Thalassemia and Depression
« Reply #26 on: September 26, 2009, 05:18:09 PM »
Thank you so much Lena for your re-assuring reply. I needed it so much because i deal just with my instinct which i hope it is right.

Hats off Lena for your parents for their enlighted thought. Even if thalassemia was in the past prognoised as a fatal disorder --which is not the case now--why make a child suffer by depriving him/her from hope.

Please thank them for me :wub

manal

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Offline Lena

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Re: Thalassemia and Depression
« Reply #27 on: September 26, 2009, 05:25:31 PM »
It is in your post Manal that I recognised my parents.

Please be free to ask anything as I have survived through harder times.

Thank you for your kind words
,
Lena.

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Offline Zaini

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Re: Thalassemia and Depression
« Reply #28 on: September 26, 2009, 09:27:33 PM »
When i look at my daughter,i never think that she might get depressed about her condition in future,because she is quite a strong child for her age,but who knows,may be i am wrong,i have always tried to treat her as same as her brother,nothing much different,and thalassemia is very much a part of life for us,monthly transfusions and daily medicines,i never let her think that there is something wrong with her,and i keep her away from the people who think like that.

I am a bit of a strict mother,and i never let her off of anything just because she "has" something wrong with her,she has never thought that she can't do anything just because she has thal.My mother often says"i wish she doesn't have to go for transfusions" and my answer always is "i really don't mind it ma,coz i know its giving her strength and helping her grow properly and my mind is at ease".It may sound stupid but this is the it is.

I hope she won't think negatively in future,because right now she is just a child bubbling with life,and i'd love to see her that way always,and i am working hard for it.:yes

Zaini.
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Offline Lyanne

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Re: Thalassemia and Depression
« Reply #29 on: September 27, 2009, 04:28:10 AM »

  Hi all! I know what you mean, although it wasn't me who felt depressed but it was my sis, She was doing fine from all the blood transfusion and i.m. injections of Desferal but when she became a diabetic she started not taking vitamins and chelating ( this was when we already had ours pumps) She denied having diabetes at first and still eats sweets and anything she's not allowed to eat or drink, she struggled having to check her blood sugar regurlarly and inject insulin to chelating. But now I think she's doing fine. She's taking Exjade instead of Desferal. She's able to control her sugar now even better. And she once in while taking her vitamins, better than nothing right? :wink
   To Zaini,that's the attitude!
LYANNE :yahoo

 

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