Thalassemia - Genetic Blood Disorder

[zaphodbeeblebrox]

My girlfriend who lives in Chiang Rai has thalassemia. Both of her parents had it. She probably will need to get her first blood transfusion next month. There must be quite a few members out there who have had experiences with treatment for this disease. I'd like to know how much Thais have to pay for the various modalities of treatment: blood transfusion, splenectomy, iron chelation and stem cell therapy (if that's even offered in Thailand).

[jimmym40]

We found out my wife has thalasemia-minor about 15 yrs ago. It's a very long story. She was very week, given iron pills by doc, for two yrs, and finally doc said, iron supplement doesn't work. This was a doc in USA. Finally, blood tests were done (maybe the doc knew it all the time, but had us coming back every month) and we got the diagnose. If you are in Thailand, if you want to hear our experiences, you can call me. I will say that you must do your own research (google it) and then find a specialist to get professional guidance/treatment. There is an excellent doctor here in Chiang Mai that I would HIGHLY recommend,

very knowledgeable in this disease.

My wife required blood transfusions (while we were in the USA every two months), and were covered by insurance. We moved permanently to CM five yrs ago and she still required transfusions every two months (her hemoglobin was below 8.0). Her hospital treatments consisted of two units of NAC blood (outpatient). Took about a total of 5-6 hrs in the hospital. Total charge for the blood and service was aprox 4,000 baht. She required transfusions every two months here for almost 14 months, since then, she's been on the border line of needing transfusions (hemoglobin stays around 8.3 - 8.70 which is still very low, but not enough to warrant transfusion.

As I've said, read up all you can. There are different stages/types of thalassemia. Many people have it and are not severely affected. People with the moderate type require transfusions, and some with the most severe, die from it.

If I may ask, how old is your g/f? How did she come to find out that she has it?

[Sheryl]

If your GF has a "gold card" (universal health coverage scheme -- majority of Thais have this) and receives care in a government hospital, or if she is covered under Thai social security and receives care in a hospital registered with that scheme, standard treatment should be virtually free.

Bone marrow transplants are done in Thailand, but reserved for severe cases. As your GF is only now needing her first transfusion she is not likely to be such. There is also the problem of finding a compatible donor.

There are a number of clinical trials underway in Thailand or about to start, including one in gene therapy. These will also probably be limited to severe cases/cases where standard frontline therapy is not sufficient.

Thalessemia is very common common in Thailand and the public health system has quite a bit of expertise in managing it. If she is not already, she should try to get registered in the hematology clinic at the provincial hospital (Prachanukrog Hospital, in CR town). The standard of care there will be better than that available in district hospitals.

[jonnyscot]

If your GF has a "gold card" (universal health coverage scheme -- majority of Thais have this) and receives care in a government hospital, or if she is covered under Thai social security and receives care in a hospital registered with that scheme, standard treatment should be virtually free.

Bone marrow transplants are done in Thailand, but reserved for severe cases. As your GF is only now needing her first transfusion she is not likely to be such. There is also the problem of finding a compatible donor.

There are a number of clinical trials underway in Thailand or about to start, including one in gene therapy. These will also probably be limited to severe cases/cases where standard frontline therapy is not sufficient.

Thalessemia is very common common in Thailand and the public health system has quite a bit of expertise in managing it. If she is not already, she should try to get registered in the hematology clinic at the provincial hospital (Prachanukrog Hospital, in CR town). The standard of care there will be better than that available in district hospitals.

Hi, I am quite interested in this topic as my wife also has Thalessemia, she also has a rare blood type, I assume she has a mild form of it as other than the odd headache, she doesn't appear to be much concerned about it, I am wondering whether she should be going for regular checks, and whether there are anything that we should be watching out for? please excuse the lack of knowledge on my part about this condition.

thanks

[jimmym40]

If your GF has a "gold card" (universal health coverage scheme -- majority of Thais have this) and receives care in a government hospital, or if she is covered under Thai social security and receives care in a hospital registered with that scheme, standard treatment should be virtually free.

Bone marrow transplants are done in Thailand, but reserved for severe cases. As your GF is only now needing her first transfusion she is not likely to be such. There is also the problem of finding a compatible donor.

There are a number of clinical trials underway in Thailand or about to start, including one in gene therapy. These will also probably be limited to severe cases/cases where standard frontline therapy is not sufficient.

Thalessemia is very common common in Thailand and the public health system has quite a bit of expertise in managing it. If she is not already, she should try to get registered in the hematology clinic at the provincial hospital (Prachanukrog Hospital, in CR town). The standard of care there will be better than that available in district hospitals.

Hi, I am quite interested in this topic as my wife also has Thalessemia, she also has a rare blood type, I assume she has a mild form of it as other than the odd headache, she doesn't appear to be much concerned about it, I am wondering whether she should be going for regular checks, and whether there are anything that we should be watching out for? please excuse the lack of knowledge on my part about this condition.

thanks

From out experiences, your wife will know if/when she will need a check up. She will feel tired, week and dizzy. It causes a lack of oxygen to the brain because of the low red blood cells. So, if she feels this way, just go to a lab or hospital and get her hemoglobin checked. She can have a CBC check which probably doesn't cost not more than 100 baht more than just the hemoglobin check.

[Chris Lawrence]

My wife has this condition , is 41 and appears to be well. Every now and then does get the headache(severe) and dizzy; apart from this appears OK. I found this out just before our son was born in Chiang Rai. This was about 6 years ago. My wife knew about it but it doesn't appear to give her much concern. I think I worry for her?

What I did find out that the condition was common in the area as it also gave some protection against malaria. A common condition in this area, Burma and India.

This is the first time I have read the progression of this condition in others from this area.

My son has not got Thalassemia. Our Doctor is also aware of her condition here in OZ.

[jonnyscot]

If your GF has a "gold card" (universal health coverage scheme -- majority of Thais have this) and receives care in a government hospital, or if she is covered under Thai social security and receives care in a hospital registered with that scheme, standard treatment should be virtually free.

Bone marrow transplants are done in Thailand, but reserved for severe cases. As your GF is only now needing her first transfusion she is not likely to be such. There is also the problem of finding a compatible donor.

There are a number of clinical trials underway in Thailand or about to start, including one in gene therapy. These will also probably be limited to severe cases/cases where standard frontline therapy is not sufficient.

Thalessemia is very common common in Thailand and the public health system has quite a bit of expertise in managing it. If she is not already, she should try to get registered in the hematology clinic at the provincial hospital (Prachanukrog Hospital, in CR town). The standard of care there will be better than that available in district hospitals.

Hi, I am quite interested in this topic as my wife also has Thalessemia, she also has a rare blood type, I assume she has a mild form of it as other than the odd headache, she doesn't appear to be much concerned about it, I am wondering whether she should be going for regular checks, and whether there are anything that we should be watching out for? please excuse the lack of knowledge on my part about this condition.

thanks

From out experiences, your wife will know if/when she will need a check up. She will feel tired, week and dizzy. It causes a lack of oxygen to the brain because of the low red blood cells. So, if she feels this way, just go to a lab or hospital and get her hemoglobin checked. She can have a CBC check which probably doesn't cost not more than 100 baht more than just the hemoglobin check.

Hi Jimmy, thanks very much for the advice, much appreciated

[Sheryl]

Need to understand that thalassamias are a group of diseases, not a single disease, and that there are a number of variations. Both what are called alpha and beta thalassemia are found in Thais although the alpha is more common, and there are different degrees of the disease depending in the number of genes affected. Further complicating matters, there are other genetic hemoglobinopathies common in Thailand which can interact with thalassemia if both are present.

Thalassemia may be inherited from only one parent or from both. If beta thalasssemia, which inviolves only 2 genes, is inherited from both parents, a significant anemia will result and is often evident from early childhood or infancy; it may also lead to stillbirth in the womb. If beta thalassemia is inherited from only one parent, the person is usually asymtomatic. They may have normal blood counts or a mild anemia. this is usually referred to has having the thalassemia trait or being a carrier, as opposed to having full blown beta thalassemia

The picture for alpha thalassemia is more complicated because 4 genes are involved, 2 from each parent. If inherited from only one parent the person will either be what is termed a "silent carrier" (1 out of 4 genes abnormal) or have the "thalassemia trait" (also sometimes called alpha thalassemia minor), which clinically is similiar to the beta thalassemia trait i.e. usually asymptomatic and with no or mild anemia.

In most instances the most important implication for someone with thalassemia trait (1/2 beta or 1-2/4 alpha genes affected, often first diagnosed during routine screening in pregnancy.) is not for the person themselves but the possibility of passing the trait on to a child, especially if the other parent is also a carrier in which case a child may be born with the severe form of the disease.

However if the thalassemia trait coincides with another hemoglobinopathy, the anemia may be more pronounced and require treatment. In Southeast Asia there is an abnormality called hemoglobin E which is very common. By itself, the hemoglobin e trait usually causes no problems, but combination with thalassemia trait results in a more severe anemia than either trait alone would cause. The combination of beta thalassemia trait and hemoglobin E trait in particular can produce significant disease.

I find that Thais who have only the thalassemia trait often do not understand how this differs from the full blown disease and describe themselves as having thalassemia; they may also sometimes mistakenly ascribe symptoms to this that in fact have nothing to do with it, a result usually of inadequate explanation of their condition. The Thai public health system does an overall good job of providing treatment but a terrible job of educating people about their conditions, a real drawback in the case of chronic diseases like this.

It is important to get a clear diagnosis of the type of thalassemia present; and whether any other hemoglobinopathies are also present, before any recommendation can be given about management. In the case of the OP, since transfusion is planned, the woman obviously has more than just the thalassemia trait. But I can't say re some of the other poster's wives/GFs.

[justcruisin]

A big thanks to Sheryl for the very infomative information.

My wife also has Thalassamia Beta inherited from both parents.

The treatment my wife undergoes mainly consists of a lot of oral drugs,(12 a day) including iron chelate as well as monthly blood checks.

Over the past 2.5 years we have been together I am not aware of her undergoing any blood transfusions.She is able to maintain a fairly normal lifestyle including working, but she does tire easily and likes at least 8 hours sleep daily.

Luckily she is covered by the Thai health system and the main cost we pay for are the drug prescriptions.

I have read somewhere that the life expectency can average around forty years, presumably in the worst form?

[Sheryl]

If she does not require transfusions, she is nowhere near having the most severe form of the disease.

In really severe cases, transfusion is required frequently from early childhood.

In milder cases of beta thalassemia the person may live a normal life span. So I think there is cause for optimism in your wife's instance.

[Chris Lawrence]

Many thanks Sheryl for a straight forward brief on the disease.

I remember when the Doctor in Chiang Rai told us of the condition, that I could see concern on his face but did not go into great explanation as to what the condition was. And of course no printed information. The concern of the doctor was to see if I had the condition as well, due to my wife being pregnant at the time. As I did not have the condition nothing else was said from the medico. I also believe that our culture tends to ask more questions, whereas my wife was happy that our baby was OK. I got information off the net, but this I think just went over her head, mainly because there was not a great concern. Yeah, me against a Thai Doctor; the doctor has more creed?

My wife is not bothered by the condition as she see's it, but on reflection of what I have read here I do see some traits with being tired and at others times in a cycle when headaches and dizziness are more pronounced. It also means that her skin is more white than the rest of her family; they being more darker complexion.

[soihok]

Thanks for all posters comments.

My wife has Thalassemia B, so both our girls are aso Thalassemia B.

We found out leading up to the birth of our second child ( who has had a blood test confirming the disease ). I acutually thought it is a condition rather than a disease.

The doctor has informed us that if our daughters future partners also have a Thalasemmia problem, their childern will be severely affected. Which is sad, but what to do. There is no cure.

This is a double blow for our eldest daughter who is brain damaged, for which there is also no cure.

My wife shows no signs of being adverserly affected by the condition, but does tend to sleep a lot. Something I put down to "her being a bit lazy", but now I understand more.

Thanks for the imput Sheryl.

[soihok]

My wifes skin colour is the same as her brothers by the way ( very dark ).

Both girls are quite light but as I,m a pinky white English bloke, that's to be expected

Cheers

[a99az]

My wife also has it, was not discovered until she went for her first prenatal check up, then I had to go for a blood test. I was negative as expected so she was put on iron supplement and all was well. She does not need treatment so I guess it's a mild form, and glad to say my kids are all clear.

[OlafStapleton]

Thalassemia

Genetic damage thought to be caused by ancestors catching malaria (variation on sickle cell anemia)

Estimated to be as common as 80% of Thai females, not so much in men.

Benefit is increased immunity/resistance to malaria.

If only 1 parent has it, unlikely to have any symptoms in child, child has 50% chance of becoming carrier.

If both parents have it, child may or may not have symptoms. Varying from early death (20s) if untreated to nothing at all.

both parents have then child chances 25% clear, 50% carrier, 25% serious

Edited June 19, 2011 by OlafStapleton

[soihok]

Interesting.

My wife has had Malaria.

Does this also give the children a resistance to the disease?

At least theres something positive there then.

[Sheryl]

No, having malaria dies not confer immunity and in any event this is not an infectious disease, it is a genetic one, so immunity does not apply.

[T_Dog]

Regarding Thalassemia, be aware that if one has it and gets a moderate or high fever, there is a high likelihood of hemolysis occuring which puts the patient at risk. My wife has a mild form of Thalassemia and nearly died two years ago from a fever due to a viral infection. If you go to a hospital regarding a fever, make sure to tell them that you have Thalassemia. The doc told us to stop by the hospital any time she has a fever to get the red blood cell count checked. In the case where we found out about this, my wife was unresponsive until two units of blood were administered. It was a very scary way to find out about this sensitivity with Thalassemia patients.

[Phuketshrew]

My son was diagnosed with thalassemia a couple of months ago. He is 21 years old and some days really struggles with tiredness and lethargy. He had to make trip to Samitivej hospital today as he was vomiting, having palpitations and trouble breathing. They gave him some injections drugs and oxygen.

We have both been trying to find out how best to deal with the symptoms. He exercises with weights and has looked at his diet more closely. It was interesting to see on some of the forums what different sufferers recommend works for them. This link has a lot of posts from many thalassemia diagnosed people: http://www.medhelp.o...w/156154?page=1

Some interesting things that help range from Redbull, red wine, red beef, green veggies to oxygen.

I was particularly interested in Oxygen as my son said he felt 'instantly 100 times better' after taking oxygen at the hospital. Further research revealed that oxygen canisters can be bought (aren't they used by asthma sufferers?). But where to buy in Bangkok?

I would like to be able to buy some Oxyfit ( http://www.oxyfit.co...-sufferers.aspx ) or a similar product. Does anyone know whether this is available in Bangkok or would it be safe to try and order it from abroad?

[Sheryl]

You can get oxygen canisters at medical supply shops and some large pharmacies, but I don't advise it as a home measure. It is reserved for supportive management of severe hypoxia only and in such a case he should already be in a hospital.