thank God i found this site

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Offline carmi

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thank God i found this site
« on: September 14, 2008, 10:59:07 AM »
i am new here and newly diagnosed with thal minor.. im dealing with it with complete shock and tears//I guess ignorance of the disease makes me feel helpless.But now im researching and I am inspired with all your stories.
 I thought that i was dying... then again I realized that I am only challenged and have to deal and manage my disease


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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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Re: thank God i found this site
« Reply #1 on: September 14, 2008, 11:30:20 AM »
Hi there!

:welcome to the site.

First of all; don't panic. Thal Minor isn't as bad as Thal. Major. You should find some inspiring posts from Thal. Major who lead perfectly normal lives. While for Thal Minors life can be as normal as anyone else's if you have a healthy lifestyle.

May I ask if you are experiencing any severe symptoms?
اَسّلامُ علیکم Peace be Upon you
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Offline carmi

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Re: thank God i found this site
« Reply #2 on: September 15, 2008, 02:16:38 AM »
 hi!!!!!!!i get tired easily and i have consistent anemia symptoms

does bruising easily a symptom of thal minor?because i have unexplainable bruises sometimes and i am wondering does it mean anything?  :dunno

everyone in this site has been very nice to me thank you so much

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Offline Sharmin

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Re: thank God i found this site
« Reply #3 on: September 15, 2008, 03:16:13 PM »
Dear Carmi,

It is nice to have you on this site.  I am glad that you have found all of this information. 

Please be assured that most of the severe symptoms discussed on this board are regarding thalassemia major and intermedia patients.  Many thalassemia minor (carriers) are not even aware that they have thalassemia minor and they tend to live very normal lives.  Also note that thalassemia trait is inherited which means that at least one of your parents & grandparents etc etc is also a thalassemia minor.  Therefore your siblings, cousins etc may also be carriers.  If your other family members are fine then you most likely will be as well. 

For myself and my family, thalassemia minor has not been an issue.  We all grew up very athletic, we are all married and most of us have children.  My thal minor grandmother is 80 years old and going strong.  My greatest concern is that I married a thal minor so one of my children has inherited thalassemia major.  We have had some troubles with him but on the whole (thank god) he is very healthy and not much different than other children. 

A few thal minors have symptoms with thalassemia, but usually if it is coupled with other problems such as sickle cell or thyroid problems.  In your case, I think that you will be just fine.  Yes thal minor can cause some anemia, but because we have had these hg levels all of our lives our bodies learn to accommodate.  And yes, we can have some fatigue but I don't really know when to attribute that to thalassemia.  My non thal friends complain about fatigue much more than I do - and the heroic thal minor moms that are on this website do MUCH more than any parent I know.   My mom has thal minor, and she is 5'7" and a force to be reckoned with!!!  She is tougher than anyone I know.  I can't say much about the bruising, I don't think I bruise any easier than other people but you can discuss it with your health care provider. 

I hope that I have reassured you that a 'diagnosis of thalassemia minor' does not mean that you have suddenly contracted a terrible disease and illness.  It has always been there in you and your family.  If you feel other symptoms please have them checked.  Have a balanced diet, excercise and take the supplements that are talked about on this site and you should be just fine.   One implication of thal minor is that you may need to be careful in selecting a mate because if you marry a thal minor you have 25% chance of have a thal major child. 

Once again, it is really nice to have you on the website and I hope we can help you in dealing with any fears you may have had and that we can help you in addressing any other concerns.    I am sure Andy can give you a lot more information.  I'm sure that your future will be a lot sunnier than you were thinking when you were told about the thalassemia minor. 

All the best and keep posting!!

Sharmin
 :welcomewagon




Sharmin

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Offline carmi

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Re: thank God i found this site
« Reply #4 on: September 16, 2008, 02:13:17 PM »
 :wah   ohhhhhhhhhhh sharmin,

i appreciate all the kind words you said...... :wink
Its enough for me to know that as you are coping with the changes that thal  gave to you and your family... You are living a fuller life... that was my fear,when the hematrologist broke in the news to me... I thought that I was to live life at the sidelines,when i as living  it in the center....there were many fears that went with it.BUt right now im managing through educating myself and somehow feeling lucky but sad though that my siblings might have it too and may pass it on our bloodline... I still have to convince them to get tested....

i am like attributing all aches with thal right now,like back aches and bruisings... hahahaha but some of my fears are answered...a miliion thanks to this site and the people like youy andy that who never seize to help newbies.. as some call it
you know im really inspred on how you and your family took charge of thal... its like telling me  with a pat on the back " everythings going to be alright" that is what i really need right now...thank you

 :wah :wah :wah :wah :wah :wah :wah :wah :wah :wah :wah :hugfriend
may you and this site continue to enlighten people like me

see u around...kissess for you  :wink :wink :wink :hugfriend


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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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Re: thank God i found this site
« Reply #5 on: September 16, 2008, 02:19:21 PM »
Hi,

You don't need to live in the sidelines with Thal. There are few people with Thal living in the limelight like Zidane the soccer player and Pete Sampres the tennis player.

You can be the next :yes
اَسّلامُ علیکم Peace be Upon you
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Offline nice friend

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Re: thank God i found this site
« Reply #6 on: September 16, 2008, 06:54:16 PM »
hey carmi :
 dont need to live in the sidelines , live in the center forward ( attacking positon in soccer )  like zidane .. dodge the thalassemia and achieve your goals .. best of luck :goodluck
« Last Edit: September 21, 2008, 06:10:04 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 Zaini

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Re: thank God i found this site
« Reply #7 on: September 17, 2008, 03:47:55 PM »
Hi Carmi,

You must have read all these wonderful posts by our wonderful members, and i am sure these must have helped you,i am a thal minor my self,and yes i do get tired easily,but apart from that i don't have any serious problems.You can totally look forward to have a romantic relationship as any other person,we even have thal majors who are married and they also have kids,so nothing to worry about.
Your main concern should be getting your partner tested if you ever plan to have kids with him,because if your both the partners carry thal minor there is a 25 % chance that you can have a thal major baby,and if your partner is a thal carrier,again thanks to God there are ways to know in very early pregnancy if your baby carries the disorder.
So don't worry and live the life to the fullest,:) and by the way you are warmly welcome . :welcomewagon.

Zaini.
^*^Xaini^*^

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Offline maryo0m

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Re: thank God i found this site
« Reply #8 on: October 25, 2008, 01:25:06 AM »
Hey Carmi,

welcome to the group, awww you shouldn't be in tears sweety really you as athal minor dont have to worry about a thing, relax  :wink

Thal minor do get unexplained bruses , all I can say is keep your diet balanced and healthy and make sure you take vitamins tablets...

also dont over work your self out and you should be fine :hugfriend



best wishes,

mariam
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