Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: mudslinger on May 04, 2006, 12:28:01 PM
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greetings from kuala lumpur, malaysia! this is my third time at this site, but my first time posting. i'm a beta thal intermedia, with a hb of about 6. i was on regular transfusion when i was younger (from ages 7 - 12) as the doctors diagnosed me as a thal major. oh, i'm a female, and will turn 30 this 12th of may.
i just started on L1 (deferiprone) and it's my 14th day today. the first eight days were pure hell for me, with terrible nausea and constant vomitting. :-\ i couldn't eat and was just sickly. now i'm still taking one tablet 3 times a day, but the vomitting has stopped since. the nausea is still there, but very mild compared to the first week of L1.
anyway, just wanted to say hi to everyone, and to say thanks for a great site where we can share experiences and much more.
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Welcome to the family!
Please feel free to share your experiences of treatment in Malaysia.
By the way, I am really sorry to hear your bad experiences with L1 try adjusting the dose with your doctor's advice.
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Hi,
Do you mind sharing the story what makes doctor change his/her mind about your diagnosis from Intermedia to major.
Thanks
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Welcome to our wonderful group! It's great to have you posting here with us. :biggrin
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Hi,
Do you mind sharing the story what makes doctor change his/her mind about your diagnosis from Intermedia to major.
Thanks
dear canadian_damily,
i'm sorry i took so long to reply to your question. actually when i was first diagnosed i was two years old. my mother kept me off transfusion for as long as she could but when i was seven, my mother was advised to bring me for treatment. since then the doctors who treated me took it for granted that i was a major. at that time, probably they were not that advanced, so anytime they hear 'thal.', they would just give transfusions.
later when i was about 12, my parents brought me to see a family friend who's actually a heamatologist. he got me to take another series of blood tests, and finally confirmed that i was more of an intermedia, than a major. i could get away without transfusions, but my hb would always be on the low side.can you imagine how i felt? after all those years of transfusions? which now by the way has resulted in me having to take L1 to get rid of all the excess iron in my body.
i am thankful though that i do not have to go for transfusions anymore (except when i had my operations to remove my gall bladder and more recently my spleen). however, i have to be content with a hb of 6 all the time.
i hope this answers your question....
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Hello,
I also have intermedia. I was wondering what your energy level is like with your very low hemoglobin. Do you get sick often? When my hemoglobin was that low, I had low energy and was sick all the time. :dunno Hope you are doing OK. Jean :smileblue
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Assalammualaikum!!
Heeloooo Mudslinger...
I am from Malaysia too and just joined in...
I hope that you get better and take care.....
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Asalam-o-Alaikum Zuliah,
:welcome to the family. Please feel free to ask any question that you have in mind about Thalassemia. Tell us how Thalassemia relates to you and tell us anything about it regarding your personal experiences.
All members are very friendly and helpful and I hope you will find this site very useful.
Take care, Allah Hafiz!
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Hi everyone,
How r u? Just joined this site.. Thank You for setting up such a great site that allow us to share the thoughts, experience, knowledge.. very meaningful.. to the administrators n the team maintaining the site, Well Done & Keep it Up! :cheer
I'm Crystal from Malaysia. I have alpha thal trait.. n married to another alpha thal trait husband! :dunno
We were married for a year now .. doctor told us that 2 thal parents will have 1/4 chance of giving birth to a major thal baby.. this can be diagnose during the 3rd mth of prenancy.. my husband wanted his own baby so much.. but I have worries even if we are lucky enough to pass thru the 1/4 chance, is there other risks or complications... that's why I'm here... :smile
I'm hoping to learn more about thal here.. and hoping to find similar experiences..
Nice to meet all of you! Happy New Year 2007.. may it be another great year! :love
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Hello Crystal!
:welcome to the site!
I hope that you find the answers to all the questions in your mind and feel free to ask about anything that you want to.
Congratulations and best wishes for your baby! Hopefully everything will be just fine!
Take care, Peace!
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I'm Crystal from Malaysia. I have alpha thal trait.. n married to another alpha thal trait husband! :dunno
We were married for a year now .. doctor told us that 2 thal parents will have 1/4 chance of giving birth to a major thal baby.. this can be diagnose during the 3rd mth of prenancy.. my husband wanted his own baby so much.. but I have worries even if we are lucky enough to pass thru the 1/4 chance, is there other risks or complications... that's why I'm here... :smile
Welcome to the Thal website Crystal,
The doctor is right when he mentioned there are 25% chances of having a Thal(Major) child
Alpha Thal is quite complex. I think most people on this site have Beta Thal(Major). I do NOT know of anyone who is Alpha Thal(Major). Does anyone else know about it?
It would be important to learn if you and your husband have 1 gene or 2 gene deletion. Would you share with us, what tests were done to find out you both are Alpha Trait? Was it DNA testing?
From:- http://sickle.bwh.harvard.edu/thal_inheritance.html
The inheritance of alpha thalassemia is complex because each parent potentially passes two of their four alpha globin genes to the offspring.
I would recommend, you and your husband to get genetic counselling before you plan for a family, especially because Alpha Trait can lead to hydrops fetalis (and in this case the offspring might die in utero or in rare case, utero blood transfusion have allowed the birth of the child with Hydrops Fetalis) or Hemoglobin H. While the decision is entirely in your and your husbands hands, it is very good that you are trying to find out more before you move ahead. I wish all couples do it!!(because most are taken by surprise and that is tough)
Another reference for Alpha Thal(Trait) is :- http://www.cooleysanemia.org/updates/pdf/Alpha_Thalassemia.pdf
I wish you all the luck
-Narendra
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Crystal,
I really do NOT want to scare you, but here are another important notes
From:- http://www.sickle-thalassaemia.org/Alpha%20Thal.htm
Alpha thalassaemia major is a serious blood disorder because it affects the baby whilst it is growing in its mother's womb. If a baby inherits this condition, the mother will also be at risk of serious complications during pregnancy
Testing the baby in the womb is called prenatal diagnosis and can be done as early as ten weeks of pregnancy in most cases. The test is done in a hospital and the result is usually available within 2 - 4 weeks, depending on the type of test you are offered.
-Narendra
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Hi Crystal and welcome to the group :hithere
Alpha thal trait carriers have two of the four alpha globin genes affected. If both you and your husband are alpha trait, then there is a real danger of having a child with 3 or 4 affected genes, and as Narendra has said, if all 4 genes are affected, the child will not survive past birth because its body will produce no usable hemoglobin. This is what is also referred to as alpha major. Three gene alpha can lead to a condition similar to beta thal intermedia, with symptoms ranging from mild to severe (hemoglobin H disease). there is a good explanation of alpha thal at the Northern Comprehensive Thalassemia Center site, at http://www.thalassemia.com/alpha_thal.html
Narendra has brought up an important issue that deserves the emphasis he gave it. Couples must become educated to the facts about thalassemia. If you know you have the gene or are even from an ethnic group where you may be a carrier, it is mandatory as a responsible adult, that you be tested and have your spouse tested also, before making a decision to have children. Thalassemia is far more wide spread than people realize and the alpha thal genes are even more common than the beta genes. With current emigration patterns, thalassemia is quickly becoming a major issue for countries that previously saw few cases, such as the US. This disturbing trend may have a bright side though if it means people in the developed west become aware of the huge problem confronting people throughout the world. As it becomes a problem in the west, it is certain more effort will be put into research to treat and even cure thal. Narendra and I have a very important thing in common. We both strive in our daily life to take advantage of any situation where we can educate someone about thal. None of us should say the problem is too huge. We should each do our part to educate and spread awareness about thalassemia.
Crystal, if you and your husband both carry two genes, you may want to consider in vitro fertilization to ensure you do not take the chance of having an alpha major. Unlike with beta thal, a major will not survive. I would also suggest that you both undergo thorough testing to make sure neither of you are also beta thal carriers, as the combination of alpha and beta is slowly becoming better understood, and it can create symptoms ranging from minor to intermedia.
Regardless of whether a couple decides to take a chance and have a child knowing that they are carriers, they do need to educate themselves to the facts so they can make a proper decision based on what they know they can do in terms of caring for a child, and what type of life they can give their child.
When we started out, Danielle and I discussed whether or not to add an alpha thal category, as it seemed we didn't hear much about it, and because it often fits into the intermedia category. However, this and some other recent posts are making me re-visit this idea. While we don't wish to become cluttered with too many categories, I am wondering if the members feel we should start a separate category for alpha thal. Let us know what you think.
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Hi Andy & Narendra,
Thank you for the sharing the knowledge about thal & alpha thal. We have done the DNA test & doctor confirmed that we have alpha trait. The doctor just mentioned that if I get pregnant then I can go for the test if the baby is affected. However, from what I gather here it is way more complex than this. I also have doubts even those tests were carried out when I'm pregnant, are the results reliable? Would there be any hidden treats ?
Now that I've more info gathered here that make me realise that the consequences it may lead us, my husband & I really have to seek more consultancy & research on this subject.
We are going to see a doctor in the fertility centre on Monday. He mentioned that the centre is developing a technique (PGD-PCR) to screen for healthy fertilised eggs before transfer. I guess this might be a safer option. However, I don't know if this is the best options we could have.
I think in Malaysia Thal awareness is still very minimum & lacking. I also don't know where would be the best place for me to seek consultancy. If anyone in Malaysia that have doctors that we could refer, kindly let me know ya! TQVM!
Andy, would you be able to let me know if any members here have alpha traits ? Perhaps I could learn more from them. :smiley
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Hello Crystal
Welcome to the site. :flowers
I am in contact with a medical center in Chicago where they do the PGD before transfer. I have all the details including the cost and contact numbers. If you want the details, please let me know
Take care
Manal
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Hi Manal,
Thanks. If you could, please share the PGD info with me. You can send personal message to me if you would like. TQVM! :smile
I've went to the fertility centre on Monday and the doctor said the PGD is new technology that only available sometime end of this year. I guess Malaysia is very much behind.. :sadyup The doctor said the centre will contact me when the tech is available. He mentioned I could wait for the PGD or another option to get pregnant first then do the test. :dunno Don't know what else I can do...
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Hello Crystal
I wouldn't mind sharing this information with all members here, may be it would be beneficial to any one.
I have the same problem here in Egypt too because PGD is used only in sex selection, but in diseases it is only 60% accurate. Anyway, the name of the medical center is the ''Reproductive Genetic Institue '' in Chicago. When i emailed them, i was asking about the possibility of concieving a baby with no thal in addition of having a HLA type matched with my son (who is a thal intermedia as i was thinking of a transplant at that time)
Anyway they told me that this is possible and that you have to spend from 7 to 10 days in Chicago and the prices were as follows:
*IVF (for one cycle) is for $10,000
*Setup (includes DNA tests for the parents, designing their plan in biopsy in terms of time and whether the PGD will be done on the blastomere or the polar body, other tests,...etc) for $7000
*Biopsy for $ 1500 ( that is a flat price, no matter the number of embroys available)
* PGD for thalassemia is for $ 2500
* PGD for HLA matching for $3000 ( you will not need it in your case )
* You can check for Down's syndrom ( that is optional for $ 2000)
These prices exclude the medications taken. They mentioned that after pregnancy (each embryo that is transferred to the womb has a 30% chance that is going to continue and by the way this is the normal percent even for normal conception. That is why in IVF they usually transfer more than one embryo in order to increase the chances of having a baby) a CVS or aminotic tests should also be done to confirm the PGD. Their success rate is 98%.
To tell you the truth, i discussed with them having the IVF in Egypt ( by the way they are very nice and gentle people in this center) in order to decrease the price because IVF is much much cheaper in Egypt and at the same time we have here high sucess rates. So i suggested that they send me an embroyologist here in Egypt to do the biopsy (biopsy is done here,but it needs a lot of skill and well trained doctor in order not to damage any embryo because in my case only 3 embryos out of 16 are suitable for me), then to take the cells to chicago to do the PGD and then send me by fax which are the suitable to be transfered. By the way in this cenario, my embryos will be frozen till i get their answer because embryos should be transfered either in day 5 after egg retrival or be frozen and be transfered the following month.
Actually at first, they said that they don't do this unless i am in the USA as they can send their doctors across the states only. But at the end they agreed but of course i have to pay for the doctor flight ticket, accomodation, hotel, food,....etc .
Now i am in the process of evaluating all this story in terms of money, family circumstances,other varaibles,.....
My advice to you is to contact them and if in Malaysia, they are good at IVF and embryo biopsy so you can do them at your country and send the cells to chicago to be tested there.
Hope these information could be of any help to you. Please if you can't understand anything, just ask me
Take care and good luck
:goodluck
Manal