2018 April - 27 articles
Introducing the first mobile app designed specifically for the Thalassemia community; Thalime, your personalized private community. Thalime is a free app that connects patients and caregivers of Thalassemia to others who know what you’re going throug...
Access to the essential medicines is an important challenge in the developing countries. To have access to the quality and affordable medicines, the pharmaceutical decision makers try different strategies. The production of generic and copy medicines...
In response to the fundamental shift that has been taking place in the way chronic diseases are perceived and managed and the increasingly established role of patients as equal partners in the management of their condition, the Thalassaemia Internati...
Access to the essential medicines is an important challenge in the developing countries [...]
The factors determining the health behaviours may be seen in various contexts: physical, socio-economic, cultural and political. So the utilization of a health care system, public or private, formal or non-formal, may depend on socio-demographic fact...
Annual transfusion requirements in Greece exceed 600000 blood units and nearly 20% of them are used for the transfusion of 3.000 patients with Thalassemia. Thalassemia patients need to be transfused properly at the right time and with safe, fresh blo...
Chronic infection with hepatitis C virus (HCV) is a major problem for thalassaemia patients, as blood transfusions before 1990 were associated with a high risk of HCV infection [...]
In many parts of the world, research, improved technology, and better medicine have enabled people with thalassemia to live longer [...]
Although the improvements in the treatment and management of thalassemia patients in new years lead to the improved survival and quality of life (QOL) in this group of patients, QOL is still is an important dimension of care in thalassemic patients [...
The role of the Clinical Nurse Specialist (CNS) is an everdeveloping role that is integral in the care of individuals with haemoglobinopathies [...]
Osteoporosis is a prominent cause of morbidity in patients with thalassaemia major (TM) with a complex pathophysiology. Patients with TM and osteoporosis have elevated markers of bone resorption. This increased osteoclast activity seems to be at leas...
In today’s health care arena, a number of issues are being raised that have received more attention either from the health care consumers or the media [...]
Literature demonstrates that long survival and a good quality of life are achieved where the patients’ needs for holistic care are recognised and the appropriate services are offered [...]
It has been demonstrated over time that patients with haemoglobinopathies who exhibit a high level of compliance to proper therapy benefit not only from higher life expectancy but also from significantly better quality of life. The treatment of thala...
Sickle Cell Disease (SCD) is one of the most common blood disorders in the world. Pain is the primary reason for which individuals with SCD interact with the healthcare system. Generally speaking, there are two types of SCD pain: vaso-occlusive pain...
Thalassemia is a disease with an extensive morbidity profile affecting almost every organ system. Renal involvement, once considered rare, is an underestimated and poorly studied complication that has been on the rise ever since medical advances gran...
Hereditary hemoglobin disorders, also termed haemoglobinopathies, include mainly beta -thalasszemia and sickle cell disease and represent the most common monogenic disorders in human [...]
More than five decades ago, thalassemia major (TM) was fatal in the first decade of life [...]
Iron overload (IOL) is highly prevalent among patients with hemoglobinopathies; both transfusion dependent thalassemia (TDT) and non-transfusion dependent thalassemia (NTDT). Whether IOL is secondary to regular transfusions like in TDT, or develops f...
For reasons of time, this short talk will be confined to the optimal frequency, timing, indications and dosing of blood transfusion [...]
Although commonly assessed in the context of microcytosis or sickling syndrome screening, hemoglobin mutations may not be as readily considered as a cause of other symptoms. These include macrocytosis with or without anemia, chronic or episodic hemol...
Knowledge and autonomy are key aspects of informed choice; it is important to define what is important for participants to understand, when accepting or declining screening and for individuals to understand that screening is optional and their own pe...
The current influx of economic migrants and asylum seekers from countries with a high prevalence of haemoglobinopathies creates new challenges for health care systems and diagnostic laboratories. The migration of carriers introduces new and novel hae...
The molecular defects underlying haemoglobinopathies are both deletions and point mutations in the alpha- or beta-globin genes or gene-clusters. To detect point mutations causing alpha- or beta-thalassaemia, direct sequencing is the method of choice...
Decision making is an inherently complicated procedure, which by its very nature requires the decision-maker to co-opt all the stakeholders concerned [...]
Migration is the “movement of people to a new area or country in order to find work or better living conditions” (Oxford dictionary) [...]
Recent years have seen accelerating advances in the treatment, monitoring and potential cures for haemoglobin disorders, as the interaction between basic science, pharmaceutical research, and practical medicine intensifies [...]
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