Thalassemia

Common Name(s)

Thalassemia

Thalassemia is an inherited blood disorder that occurs when the body does not make enough or makes an abnormal form of hemoglobin, an important component of red blood cells. With a lack of hemoglobin, the red blood cells are unable to function properly, meaning that there is not enough oxygen delivered to cells in the body, causing people to feel tired, weak, or short of breath (anemia). Severe anemia can lead to damage to the organs and death. There are two main types of thalassemia: alpha thalassemia and beta thalassemia. Both alpha and beta include two forms: thalassemia major and thalassemia minor. Thalassemia occurs most commonly in persons from Southeast Asia, the Mediterranean, and in those of African descent. The most severe form of alpha thalassemia major causes stillbirth. Children who are born with thalassemia major, also known as Cooley’s anemia, are normal at birth but develop severe anemia during the first year of life, and can also develop other symptoms including bone deformities in the face, fatigue, growth failure, shortness of breath, and yellow skin.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Thalassemia" for support, advocacy or research.

Cochrane Collaboration

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

Last Updated: 12 May 2015

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Cooleys Anemia Foundation, Inc.

Advancing the treatment and cure for this genetic blood disease. Enhancing the quality of life of patients. Educating the medical profession, thalassemia trait carriers and the public about thalassemia.

Last Updated: 1 Jun 2015

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werathah

To provide support and health education to patients and their families with genetic and congenital disorders

Last Updated: 1 May 2013

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Thalassemia" for support, advocacy or research.

Cochrane Collaboration

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

http://cfgd.cochrane.org

Last Updated: 12 May 2015

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Cooleys Anemia Foundation, Inc.

Advancing the treatment and cure for this genetic blood disease. Enhancing the quality of life of patients. Educating the medical profession, thalassemia trait carriers and the public about thalassemia.

http://cooleysanemia.org

Last Updated: 1 Jun 2015

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werathah

To provide support and health education to patients and their families with genetic and congenital disorders

http://www.werathah.com

Last Updated: 1 May 2013

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Thalassemia" returned 1182 free, full-text research articles on human participants. First 3 results:

Correlation of hepcidin level with insulin resistance and endocrine glands function in major thalassemia.
 

Author(s): Hussein K Al-Hakeim, Manal M Al-Khakani, Mahmood A Al-Kindi

Journal: Adv Clin Exp Med. ;24(1):69-78.

 

Hepcidin is a master regulator of iron metabolism that inhibits the transport of iron out of enterocytes and macrophages. Thalassemia major (TM) is associated with some of the endocrine disorders. However, studies have yet to be conducted on the correlation of hepcidin with hormone ...

Last Updated: 30 Apr 2015

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The perception of biological experience in patients with major Thalassemia: a qualitative research.
 

Author(s): Azizollah Arbabisarjou, Tahmineh Karimzaei, Abdolghaffar Jamalzaei

Journal:

 

Thalassemia Major Disease is not only assumed as a health disorder, but also a social- economic problem in many countries. The costs of transport and preparation of drugs is considered as the greatest problems for more than 63.8% of the patients' families. This study was conducted ...

Last Updated: 6 Jan 2015

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Hepcidin is suppressed by erythropoiesis in hemoglobin E β-thalassemia and β-thalassemia trait.
 

Author(s): Emma Jones, Sant-Rayn Pasricha, Angela Allen, Patricia Evans, Chris A Fisher, Katherine Wray, Anuja Premawardhena, Dyananda Bandara, Ashok Perera, Craig Webster, Pamela Sturges, Nancy F Olivieri, Timothy St Pierre, Andrew E Armitage, John B Porter, David J Weatherall, Hal Drakesmith

Journal: Blood. 2015 Jan;125(5):873-80.

 

Hemoglobin E (HbE) β-thalassemia is the most common severe thalassemia syndrome across Asia, and millions of people are carriers. Clinical heterogeneity in HbE β-thalassemia is incompletely explained by genotype, and the interaction of phenotypic variation with hepcidin is unknown. ...

Last Updated: 30 Jan 2015

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Thalassemia" returned 68 free, full-text review articles on human participants. First 3 results:

α-Globin as a molecular target in the treatment of β-thalassemia.
 

Author(s): Sachith Mettananda, Richard J Gibbons, Douglas R Higgs

Journal: Blood. 2015 Jun;125(24):3694-701.

 

The thalassemias, together with sickle cell anemia and its variants, are the world's most common form of inherited anemia, and in economically undeveloped countries, they still account for tens of thousands of premature deaths every year. In developed countries, treatment of thalassemia ...

Last Updated: 13 Jun 2015

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[Hemoglobin H disease combined with hemoglobin Q-thailand and β-thalassemia: one case report and literature review].
 

Author(s): Jianhong Xie, Guoqing Wang, Qizhi Xiao, Yongliang Zhang, Yuqiu Zhou, Liqing Hu

Journal: Zhonghua Xue Ye Xue Za Zhi. 2014 Sep;35(9):840-1.

 

Last Updated: 23 Sep 2014

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Novel approach to reactive oxygen species in nontransfusion-dependent thalassemia.
 

Author(s): Paul I Tyan, Amr H Radwan, Assaad Eid, Anthony G Haddad, David Wehbe, Ali T Taher

Journal: Biomed Res Int. 2014 ;2014():350432.

 

The term Nontransfusion dependent thalassaemia (NTDT) was suggested to describe patients who had clinical manifestations that are too severe to be termed minor yet too mild to be termed major. Those patients are not entirely dependent on transfusions for survival. If left untreated, ...

Last Updated: 14 Aug 2014

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Reproductive Capacity and Iron Burden in Thalassemia
 

Status: Recruiting

Condition Summary: THALASSEMIA MAJOR

 

Last Updated: 2 Dec 2014

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Detection of β Thalassemia Carriers by Red Cell Parameters Obtained From the H2 Automatic Counter
 

Status: Recruiting

Condition Summary: Thalassemia; Iron Deficiency

 

Last Updated: 30 Aug 2015

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The Effect of Vitamin D Supplementation on Calcium Excretion in Thalassemia: a Dose Response Study
 

Status: Not yet recruiting

Condition Summary: Thalassemia Major

 

Last Updated: 18 Apr 2011

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