[hoping44]

Anyone have any experience or information on thalassemia? Any information will be appreciated.

[sakelley]

My husband, his sister and their father all have thalassemia trait and they have no problems associated with it. When we had a doctor look over the paperwork for our SN child that we are adopting from China, she thought that her blood tests showed that she also has thalassemia trait (that is not her listed SN though). Have you looked at thalassemia.org? It is a very informational website.

[hoping44]

Sheri,

Thanks for the website. I will certainly look at the information there. I have looked at some info already and it's somewhat confusing. I have faxed what little information we have on the child we are considering to our pediatrician. I hope he can give me some insight on the type that she has.

Congratulations on your LID. I hope you get TA very soon!

[socheltree]

Thalassemia is a condition similar to sickle-cell anemia. Those affected by it have very small red blood cells. Blood tests will show them to be anemic, though they do not respond to iron treatments. In its severe form it affects the amount of oxygen that can be moved by the blood.

Our son, who we adopted from China last September, has "thalassemia trait". By that I mean he has alpha thalassemia minor. We did not know this before we adopted him, but discovered it after we got home. It is more common in southeast asia. I think this may have to do with it being genetically selected for by the fact that those with this condition are immune to malaria.

Thalassemia is a genetic trait that is determined by a range of genes, consequently it is expressed in a range of severity. Our son is very fortunate that, like the relatives of the above poster, does not require treatment. On the other end of the spectrum thalassemia sufferers can have to endure a lifelong regimen of blood transfusions. A side effect of chronic blood transfusions is a build up of iron in the blood. This requires a treatment called "chelation" which is a slow and uncomfortable process.

So far we have not really had time to pursue further information on this beyond the basic diagnosis by our family doctor. Our intent is to try to get a more thorough evaluation by a pediatric hematologist.

Treat the above information as you would any medical info posted by a random stranger on the internet, and do your own research. The website mentioned above is a good place to start.

[bajj]

Originally Posted by hoping44

Anyone have any experience or information on thalassemia? Any information will be appreciated.

DS has beta hypothallasemia minor. I have read up on all the thallasemia's but don't recall the info, however, if you google it you can find tons of info!

[hoping44]

Thanks to all of you for the information. I have read a lot today on the internet and some of the information is not at all what I would like to see, but my hope is that this child has a very mild type.

It turns out that our pediatrician is out of the office until next Monday, so I'll have to wait on him. My sister is a nurse and I asked her to check with the doctor she works for and she what he had to say. What it really boils down to is getting the information translated and knowing what type she has. I'm just impatient and I like to research things for myself as much as possible. Again, thanks for the posts.

[annej]

My daughter adopted last summer has thelsemmia trait which was not disclosed in any of her medical. We found out when she came home. She has had no problems and the ped. said there probably will not be any but that she will need some genetic counseling when she decides to have children of her own. She can pass it on. We were mistaking it for anemia at first then more tests were done to show us what it was.
Anne J

[Reesesjiejie]

I know a lady who adopted a little girl whose medical information said she had this condition. They almost rejected the referral, but decided to take it anyway. They got the girl home, did some tests; she doesn't even have the condition, nor the trait. Sometimes blood tests from China can be misleading.

[angieandstever]

I have thalassemia minor. Like someone else said this really won't cause any problems except for offspring. My husband went to get tested after I was diagnosed and he did not carry the trait so we can have bio children safely without having to worry about it. I treated for anemia for years with tons of iron pills and was finally diagnosed with thalassemia minor about 2 years ago. I was told I may never be able to climb a mountain (not sure why and I wouldn't anyway) but other than that there are no concerns with only the trait. I was told severe forms can shorten lifespans. I would definitely consult with a physician or two to be safe. Good luck.

[socheltree]

http://www.cooleysanemia.org/sections.php?sec=152#

This is a link with excerpts from a video on living with thalassemia. I think it helps bring some perspective to things. I know when we got the initial diagnosis we were simply given the word "thalassemia" over the phone. We were left to Google up the info - and it can be pretty scary. Keep in mind, people do live with this. Your GP is the right place to start, but you really should try to talk with a specialist about a condition like this.

[hoping44]

I am hoping that our pediatrician can refer me to a specialist once we are able to speak with him. The agency that has this child listed only translates a summary of the medical report and it only gives the diagnosis. It does not give the type or whether the condition is mild or severe, so our next step is to get the twenty or so pages translated. I am hoping to find someone that can do this for us that will not charge us our life savings to do it.


I am encouraged by the personal information in the posts. I am praying that we will find that her condition is mild.

Tracy

[annapapadopoulo]

My entire family has this (I'm the exception). We didn't know until my mother started having dizzy spells in her 50s. No one else has any symptoms other than perhaps being tired more often than what's normal.

[hoping44]

I just have to share my experience. We received a small amount of information today. The little girl we are considering has been diagnosed with type b thalassemia. They did not mention transfusions so that makes me hopeful that is may be the minor form. They did say that it was 41 42 hybrid. Does anyone have any idea as to what this means.

I have called a couple of the clinics listed on-line and am waiting for return calls. While waiting, I thought I would call a hematology/oncology center nearby. The person that I spoke to was very nice and I am convinced that she did her best to be helpful. She put me on hold for a very long time, came back and said "We are trying to get you some information". I waited a while longer and then she said they had found that there were two types A and B and that B was transfusion dependent which I knew was not always the case. But here's the kicker! She went on to say that she was "surprised that this child has the disorder, it is prevalent in countries like Asia but the child your asking about is from China." I am telling you the honest truth!

I'm just gonna sit back and wait until I get a call from someone who at least knows that China is in Asia. lol

Tracy