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

View Details

 

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 1532 free, full-text research articles on human participants. First 3 results:

Last Updated: 23 Dec 2016

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Ultrafast Magnetic Resonance Imaging for Iron Quantification in Thalassemia Participants in the Developing World: The TIC-TOC Study (Thailand and UK International Collaboration in Thalassaemia Optimising Ultrafast CMR).
 

Author(s): Amna Abdel-Gadir, Yongkasem Vorasettakarnkij, Hataichanok Ngamkasem, Sabrina Nordin, Emmanuel A Ako, Monravee Tumkosit, Pranee Sucharitchan, Noppacharn Uaprasert, Peter Kellman, Stefan K Piechnik, Marianna Fontana, Juliano L Fernandes, Charlotte Manisty, Mark Westwood, John B Porter, J Malcolm Walker, James C Moon

Journal: Circulation. 2016 Aug;134(5):432-4.

 

Last Updated: 2 Aug 2016

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Anti-Thyroid Peroxidase Antibodies and Male Gender Are Associated with Diabetes Occurrence in Patients with Beta-Thalassemia Major.
 

Author(s): Giovanni M Pes, Francesco Tolu, Maria P Dore

Journal: J Diabetes Res. 2016 ;2016():1401829.

 

Intensive transfusion schedule and iron-chelating therapy prolonged and improved quality of life in patients with β-thalassemia (β-T) major. However, this led to an increased risk of developing impaired glucose tolerance or diabetes. In this study we analyzed variables associated ...

Last Updated: 28 Apr 2016

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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 72 free, full-text review articles on human participants. First 3 results:

Atypical femoral fracture in a beta-thalassemia major patient with previous bisphosphonate use: case report and a review of the literature.
 

Author(s): K Lampropoulou-Adamidou, S Tournis, I K Triantafyllopoulos

Journal: J Musculoskelet Neuronal Interact. 2016 Mar;16(1):75-8.

 

There are numerous studies presenting the beneficial effect of bisphosphonates (BPs) on bone disease of patients suffering from beta-thalassemia major (TM). Although BPs have been widely used, adverse events have been described including atypical femoral fractures (AFF). In the present ...

Last Updated: 5 Mar 2016

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Efficacy and safety of iron-chelation therapy with deferoxamine, deferiprone, and deferasirox for the treatment of iron-loaded patients with non-transfusion-dependent thalassemia syndromes.
 

Author(s): Christina N Kontoghiorghe, George J Kontoghiorghes

Journal:

 

The prevalence rate of thalassemia, which is endemic in Southeast Asia, the Middle East, and the Mediterranean, exceeds 100,000 live births per year. There are many genetic variants in thalassemia with different pathological severity, ranging from a mild and asymptomatic anemia to ...

Last Updated: 19 Feb 2016

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Extramedullary hematopoiesis on 18F-FDG PET/CT in a patient with thalassemia and nasopharyngeal carcinoma: A case report and literature review.
 

Author(s): Dasheng Qiu, Xiaoyan Hu, Liying Xu, Xiaofang Guo

Journal: J Cancer Res Ther. ;11(4):1034.

 

Extramedullary hematopoiesis (EMH) occurs in various bone marrow disorders and is most commonly seen in thalassemia and myelofibrosis. Here, we report a patient with beta-thalassemia and nasopharyngeal carcinoma having intrathoracic EMH. Our patient is a 42-year-old man who complained ...

Last Updated: 17 Feb 2016

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Gene Therapy for Transfusion Dependent Beta-thalassemia
 

Status: Recruiting

Condition Summary: Beta-Thalassemia

 

Last Updated: 21 Jun 2016

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Reproductive Capacity and Iron Burden in Thalassemia
 

Status: Recruiting

Condition Summary: THALASSEMIA MAJOR

 

Last Updated: 14 Jun 2016

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