Novartis recognizes International Thalassemia Day on May 8
May 08, 2016
Thalassemia refers to a family of genetic disorders that affect red blood cell development, and is one of the most common genetic diseases worldwide. Nearly 68,000 affected children are born with various forms of thalassemia each year, which can range from milder types to more severe cases that begin in infancy and require routine blood transfusions.
One of the most common complications across different types of thalassemia is chronic iron overload, or an excess of iron in the body as a result of frequent blood transfusions. As the body is unable to remove excess iron, it can build up in the heart, liver, and lungs and cause serious complications. In patients with thalassemia these can include cardiac disease, pulmonary hypertension, bone disease, endocrine diseases, liver fibrosis, and cirrhosis.
Most patients with thalassemia are from countries in South and Southeast Asia, Africa, the Mediterranean, or the Middle East, but immigration has brought this condition to many other parts of the world. That means physicians today are facing new challenges on a global scale as a result of widespread immigration, including some which have unique implications for patients with thalassemia.
Over the last few years, there has been an unprecedented increase in the number of immigrants arriving in European countries each year, with more than 1 million immigrants entering Europe in 2015 alone. Health care professionals working to provide these immigrants with medical care are faced with mounting challenges, including language barriers, differences in cultural beliefs and/or health systems from immigrants’ host countries, and limited institutional capacities. Additionally immigrant patients living with chronic, non-communicable diseases may also become more vulnerable during travel as a result of interruptions in continuous care and/or regular medical treatment, which can exacerbate their symptoms.
Now there is a critical need for healthcare professionals in these countries to understand thalassemia in order to provide necessary support for patients with thalassemia as they arrive.
Given this new and changing landscape, Josephine Bila, author, speaker, wellness coach, patient with thalassemia and life-long thalassemia advocate, believes that International Thalassemia Day has an even greater significance this year and reinforces the need for more education and action.
“On International Thalassemia Day we celebrate and honor all patients, including those who are no longer with us, by continuing to fight for global awareness of this disease,” said Ms. Bila. “Now more than ever, it is critical to promote global understanding of thalassemia and patients’ needs to ensure that children and adults are receiving appropriate care and the support needed to manage their illness, no matter where in the world they are.”
For more information about International Thalassemia Day, please visit the website of the Thalassemia International Federation.