Thalassemia

*** This is for informational purposes only.  My little brother  who is a clinical pharmacist will post a more detailed information when he gets a chance.  This is based on my own experience amd information I’ve come across. I hope the way I explain it will not confuse many of you.  I am NOT a specialist or have any medical training.   I am sharing this story in hopes that more Asians get tested.  It is always best to seek the advice of your doctor who knows your medical history.

About a year ago, my oldest brother told me he had thalassemia minor, but the less severe kind.  He said he was lucky that his doctor was vigilant about his health by suggesting that my brother get a full physical and blood work done.  Since, my brother is from a Southeast Asian country, the doctor had the lab test for a genetic blood disorder called thalassemia. There are two types: alpha and beta thalassemia.  According to Medline Plus website “Alpha thalassemias occur most commonly in people from southeast Asia and China, and are caused by deletion of a gene or genes from the alpha globin chain. The most severe form of alpha thalassemia causes stillbirth (death of a fetus before delivery)”.  Also the most severe victims  of thalassemia needs to get blood transfusion and folate supplements. 

Symptoms

The second form of this disorder is beta thalassemia and it is common among “…people of Mediterranean origin, and to a lesser extent, Chinese, other Asians, and blacks” ( MedlinePlus website).  To figure out if you have this disorder or what types or how severe you have to go to your physician to get a blood work done.  If you suffer from severe fatigue, shortness of breath, jaundice or bone deformities in the face it is wise to tell your health professional about the symptoms and tell them you want to be tested for thalassemia.  Sometimes, thalassemia can be misdiagnose because it is mistaken for a simple iron deficient ( anemia) and some doctors might prescribe iron pills to ratify the situation.  This is the case with me.  I would not have known that I had Thalassemia minor until my older brother advised me to get tested.  So I asked my doctor I wanted to get tested for the disorder.

Getting tested and treated: Cultural and Language barrier

There are many Laotians as well as other Asians who are not getting tested for this disorder because they are unaware or uninformed. It is mind boggling to note that at the Northern California Comprehensive Center at CHRCO that ” 80% of the patient population is of Asian origin. Many of these individuals are recent immigrants to the United States and almost half do not speak English.” The Center stresses their frusttration of adequate patient care because of the difficulty of translating the information in a clear and concise manner where a Lao or Hmong or Chinese person can understand.  If the translator does not have medical training it is much more difficult to translate biology and genetic terms to that language.  Health care providers agree that in order to understand, treat, and explain what thalassemia is, language can be a major  obstacle to overcome, but it is not impossible with a good translator.  Another problem to overcome in regards to treatment is the cultural barrier.  The difference  between eastern and western health beliefs or ideas when it comes to health and sickness can get in the way of treatment.  According to Charles Kemp from Baylor University,” Some health care beliefs and practices are related to Brahmanistic and animistic beliefs. Illness may be attributed to the loss of one of the thirty-two spirits (think also in terms of souls) thought to inhabit the body and maintain health. As with other Southeast Asians, “winds” also play a role in health and illness and bringing the winds into balance restores health or well-being. Laotian views of physical and mental wellness are also tied to a person’s ability to sleep and eat without difficulty.”  This belief can lead many Laotians to rely on their own religious or cultural beliefs to heal instead of seeking western medical help.

If you are of Asian or Mediterrean descent, you can go to your doctor to get tested for this blood disorder. Your health care provider can also recommend genetic counseling for further testing.  This is especially important because if you or your spouse both possess the trait, your kid can have thalassemia major which is the severe form of this disorder.   If  left untreated it can lead to heart or liver failure.  Another thing to be concern about is that the disorder can lead to diabetes which can be lethal if not properly managed. Of course, your doctor can advise you on what diet to follow. . According to the Cooley’s Anemia foundation, “Some people with thalassemia develop diabetes so it is important that if you are suffering from this disorder that you watch your diet to prevent  the onset of diabetes. The main cause of diabetes in people with thalassemia is iron overload in addition to these other factor and the presence of liver disease and viral infection which are common with thalassemia.”  For a detail description on the causes, effects, treatments and dietary help, please click on the following link: http://www.nlm.nih.gov/medlineplus/thalassemia.html

 

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