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Balikatang Thalassemia: A Call for Help It was a privilege to have visited with Thalassemia at the 'Balikatang Thalassemia' - a non-stock, non-profit, non-political corporation - at Dr. Fe del Mundo Medical center Foundation Philippines last weekend. Not only were my eyes opened to another reality more important than mine, but also my heart was called to reach out to the helpless little ones. After all, I am a teacher who wants to go beyond the four walls of my class room. Thalassemia is an inherited autosomal recessive blood disease. In thalassemia, the genetic defect results in reduced rate of synthesis of one of the globin chains that make up hemoglobin. Reduced synthesis of one of the globin chains can cause the formation of abnormal hemoglobin molecules, thus causing anemia, the characteristic presenting symptom of the thalassemias. (Wikipedia) "There are two types of hemoglobin, hemoglobin A and hemoglobin F. Either will do the job of carrying oxygen in the blood. Babies are born with hemoglobin F, but after a few months, the body shuts off and starts making hemoglobin A. That's called the hemoglobin switch. Thalassemia patients don't make enough hemoglobin A. Most patients are treated with a monthly transfusion of red blood cells. The transfusions help the feel better, and can prevent heart failure and bone deformity. But, the frequent blood transfusions also build up iron in the body and that can damage the heart and the liver. The most common method of ridding the body of iron is to use a drug called deferoxamine. But it means a painful and time confusing process, where the patient is hooked up to a pump (Php19,000) over a 12-hour period. Younger patients quite often want to stop taking the drug (Php300 per vial; 2-3 vials a day). Those patients who are able to tolerate the blood transfusions and the drugs now live 20 to 30 years longer than they did even 30 years ago. A small number of patients are treated with bone marrow transplants, but this is only available when a suitable donor can be found." - Balikatang Thalassemia website Unlike leukemia which is a more common blood disease, thalassemia can be easily mistaken to be anemia because of its physical manifestations. Parents usually do not know that they are carriers until they have their checked. Of all the thalassemic cases at the Balikatang Thalassemia, only one is known to have survived. Most died before they reached the age of 10. The others are waiting a slow death because their parents could not financially support them. The government has no support for them at all. This blog is a call for awareness and support. I have pledged time to do storytelling on some weekends. I am also thinking of making them the recipients of 1% of the total earnings of my business next year. |
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9/7/2009 8:16 pm |
Sis, I admire your supporting these children and making it aware for us all here in FFF. I have never heard of this disease before. Thanks for sharing... [I God is pure love...
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9/8/2009 9:07 am |
I had a blood problem in the past, but nothing like these poor kids.  Hope you can continue to help. More power to you. How can people make donations sis? Are back to teaching or are you concentrating on your work in business or both?    within each one of us, and let it begin with me (and each one of us)..one breath at a time.
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I always wanted to build a company with a heart, and I guess, I now have some people to help in mind. I didn't know about Thalassemia, too, until I visited Balikatan. I'm glad to help people be aware of this disease.
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Sis, I admire your supporting these children and making it aware for us all here in FFF. I have never heard of this disease before. Thanks for sharing... I'm glad to help raise awareness about the disease. It's the least I can do.
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I had a blood problem in the past, but nothing like these poor kids. Hope you can continue to help. More power to you. How can people make donations sis? Are back to teaching or are you concentrating on your work in business or both?
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