hi i'm new here

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hi i'm new here
« on: October 08, 2008, 09:27:50 AM »
Hi all i'm Maria 48 years from Holland 2 grownup sons and found out yesterday that i have thalassemia when the doctors assistant phoned me and said they got a letter from the hospital that i had it ,she was under the impression that the doctor at the hospital had told me wich she didn't  ??? so that's how i found out.
But my 2 boys  have to get checked to, i never heard of thalassemia before although my father is from Sardegna Italy
he said no one in his family has it ; so thats me, a very confused and unknowing Maria gonne read up on a lot of information here

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Offline Zaini

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Re: hi i'm new here
« Reply #1 on: October 08, 2008, 10:11:02 AM »
Hi Maria,

Welcome on the forum, :welcomewagon you most probably have thal minor,do you have any symptoms? any thing out of the ordinary? I mean was there a particular reason you were tested for thal? Thalassemia is a genetic disorder,it passes from parents to kids,so one of your parents must be the carrier of thalassemia,and getting your sons checked is really compulsory,as when starting a family they should know that if they have thal minor,they'll have to check their partners for the thal status too,because when both partners are thal minors ,and they decide to have a baby,there is a 25% chance in every pregnancy that the baby can have thal major,apart from that thal minor is not a very severe dis order,it can cause a little discomfort here and there in your life,but not like thal major in which patients have to transfuse frequently.

Try to read posts in thal minor section as musch as possible,it will help you with your queries and feel free to ask any question :) .

Zaini.
^*^Xaini^*^

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Offline nice friend

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Re: hi i'm new here
« Reply #2 on: October 08, 2008, 11:53:31 AM »
 Hi Mariaf ,
 :welcome :welcomewagon :welcome
 WELCOME TO THE FAMILY MARIAF !!
 its your own communit dont hessitate ,,,, feel free to ask here, wat-ever you wana ask , i hope you will find allthe answer
 regarding your concerns .... keep in touch  ... keep posting ....

 Best Regards
 Take Care
 Umair
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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Kathy11

Re: hi i'm new here
« Reply #3 on: October 08, 2008, 12:06:08 PM »
welcome to the forum  Mariaf,
 :welcome :welcome :welcome.


I hope you find answers and learn how to manage your health issues and in the process make some friends ,
Its a good start for you .this web-site has been a life saver for me personally. I  to, came  here to find answers that was few years ago, I haven't turn back since then.
Goodluck and feel free to ask questions.
Kathy

Re: hi i'm new here
« Reply #4 on: October 08, 2008, 12:57:21 PM »
Hi Maria,

Welcome on the forum, :welcomewagon you most probably have thal minor,do you have any symptoms? any thing out of the ordinary? I mean was there a particular reason you were tested for thal? Thalassemia is a genetic disorder,it passes from parents to kids,so one of your parents must be the carrier of thalassemia,and getting your sons checked is really compulsory,as when starting a family they should know that if they have thal minor,they'll have to check their partners for the thal status too,because when both partners are thal minors ,and they decide to have a baby,there is a 25% chance in every pregnancy that the baby can have thal major,apart from that thal minor is not a very severe dis order,it can cause a little discomfort here and there in your life,but not like thal major in which patients have to transfuse frequently.

Try to read posts in thal minor section as musch as possible,it will help you with your queries and feel free to ask any question :) .

Zaini.



well just had a phonecall from my doctor :(  theyre gonne check more out  several months ago i had an aneurysm in my brain aparently there's something wrong with my blood vessels that they wanne check out and they found something in my lungs  thy also gonne check  pffffffffffff then they want to do a microscopic research of i dont know what and the list gets longer and longer .
Now i'm getting woried before i always said i have the flu or a migraine but this sounds heavy  wonder why the doctors before never looked in to all off this my blood got checked dozens of times
i'm jgetting scared now   :scared

Maria

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Offline nice friend

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Re: hi i'm new here
« Reply #5 on: October 08, 2008, 01:23:31 PM »
hi Maria ,
how r  u ?.
no need to worry ..
just relax ...
and stay cool and calm everything will b O.K ....
soo stay relaxed  ....
i hope Sharmin or other will respond your query soon ...
sooo please wait  ... till then keep checking the other posts ...

take cae
bye
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 Sharmin

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Re: hi i'm new here
« Reply #6 on: October 08, 2008, 02:52:36 PM »
Welcome Maria,

It is nice to have you here.  Maria, generally thalassemia minor is not considered to be a major disorder or disease.  Thalassemia
minor, also referred to as thalassemia trait - is the carrier state of thalassemia.  When searching, be sure that you are searching thal minor and not thal major.  In most cases doctors consider thalassemia minor to be non symptomatic - which is why carriers may inadvertantly pass it on to their children (never knowing that they carry it).  There is a 50% chance that each of your children may carry it as well. 

Generally thalassemia minor is usually not something to worry about, many of the severe symptoms we discuss on this board relate to thalassemia major - which occurs when two thalassemia parents have a child - in which case there is a 25% chance that their offspring will inherit the thalassemia gene from both parents.  In this case the child would not be able to produce a sufficient red blood supply and require blood transfusions within the first few years of life. 
 
My husband and I are both thalassemia minors and neither of us has any issues with it, which is why my husband did not realize was a carrier until we decided to get married.  My only symptom of thalassemia was fatigue during my second pregnancy.   Most others in my family or my husbands have generally had no symptoms. 

Some people do experience mild to moderate symptoms such as fatigue and hypersplenism (some increase in the size of their spleen).  Your aneurysm and your blood vessel problem is likely not related to thalassemia.  Also remember that one of your parents, one of your grandparents, your siblings, your aunts and uncles are also possible carriers.  If most of them have done well with thalassemia then you can take comfort in that.  Personally, unless if your doctor feels that any problems you are experiencing a related to your thalassemia trait - then you don't need to worry about the thalassemia very much. 

It would be useful information for your sons to know if they carry thalassemia minor because as Zaini mentioned, when they plan their families, and if their partners also carry the trait they may want to see a genetic counsellor.   Generally, I don't think that thalassemia minor is a serious disorder - symptoms in most cases are mild.  Personally, if I had a child with thalassemia minor I would not be at all concerned. 

I hope that your medical professionals will spend more time explaining your results with you as well.  I hope that they also discuss what other tests they are performing and why, I can imagine feeling frightened because of the lack of information.  I hope that the issue is resolved very soon.  Please don't hesitate to ask if you have anymore questions - even if they do not related to thalassemia.  We have great experts here:) 

Please keep us posted on your follow up appointments and let us know how you are doing,  we will be thinking of you.

 :welcomewagon

a very warm welcome to our site,

Sharmin

 :welcomewagon
« Last Edit: October 11, 2008, 10:42:21 PM by sharmin »
Sharmin

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Offline Narendra

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Re: hi i'm new here
« Reply #7 on: October 08, 2008, 02:54:35 PM »
Welcome to the forum Maria,

In relation with Thalassemia, I think you are at the right place. We have several members who can shed their experience and thoughts on what might be going on.

You want to ask your doctor if they say - you have Thalassemia(Minor) or Thalassemia(Intermedia). Do you know, what your hemoglobin levels have been or what they are now? Thalassemia(Minor) can go undiagonised for years as most of the time, there are not much complications of thal(minor's). Thalassemia(Intermedia) sometimes gets challenging in later part of life. Also, do you know, what your Iron levels have been?

I think your most important step for now is to find out what's going on with aneurysm and the lung issue. They sound to be more important. Also, I found these link which show some relation of Thal and aneurysm

From:- http://www.jstage.jst.go.jp/article/jhj/42/1/135/_pdf  - Case Report for a Thal Minor with ABDOMINAL aortic aneurysms
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patient who had multiple CAAs in all main coronary arteries and AAA with beta thalasemia minor.

Another link:- http://www.springerlink.com/content/3tgu28ccgve0m9hv/

Ask questions and be prepared with lots of questions to ask your doctor. You are in the right direction by seeking information on what's going on with your body.

As Zaini mentioned, the reason it would be a good idea for your son's to get tested is for their future children. This link will give you more information on it.
http://www.thalassemia.com/gene_test.html
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It is important for individuals to be aware of their thalassemia trait status, particularly individuals of reproductive age. Depending on the hemoglobin type of a current or future partner, future children may be at risk for thalassemia disease or other related hemoglobin diseases. Prenatal and other testing options are available to couples found to be at risk for having a baby with disease.

We wish you all the luck and have patience.

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Offline Andy Battaglia

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Re: hi i'm new here
« Reply #8 on: October 11, 2008, 08:12:02 PM »
Maria,

Please ask your doctor to test for pulmonary hypertension (PHT or PAH). I would also suggest 1000-2000 mg vitamin C daily (best taken 1000 twice daily) and 400 IU vitamin E. Look for a supplement called L-carnitine also, as it improves the health of red blood cells and blood vessels. If you have had chronic low hemoglobin levels throughout life, there is a possibility that oxygen depletion over the course of your life has stiffened your blood vessels. If this is the case, you may have mild PHT which is treatable with sildenafil. Do you suffer from fatigue and shortness of breath? Do you have any blood test reports, such as hemoglobin and iron levels?
Andy

All we are saying is give thals a chance.

Re: hi i'm new here
« Reply #9 on: October 12, 2008, 07:58:50 PM »
Hi Andy,
i have an appointment with my doctor tuesday and i will ask him all of this so maybe i have some answers tuesday
thanks  for the replies guys
Yep i'm always tired that's why i went to the hospital for a check up and also i'm short of breath but i'm gonne stop smoking again.

gr Maria
« Last Edit: October 12, 2008, 08:04:46 PM by mariaf »

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Offline Andy Battaglia

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Re: hi i'm new here
« Reply #10 on: October 13, 2008, 06:55:58 AM »
Hi Maria,

Yes, you should stop smoking for all the reasons but one important one is that it constricts your blood vessels which causes even more danger. Blood thinners will cause you to bruise more easily. Because you are using blood thinners, you should ask your doctor if it is safe to take vitamin C, as it may add to the thinning effect.

Andy

All we are saying is give thals a chance.

 

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