What is Beta Thalassemia
Beta (ß) thalassemia
The ß-thalassemia is a congenital, chronic disease of the red blood pigment (hemoglobin) that accompanies those affected throughout their life. This text provides information on the symptoms of thalassemia, its frequency, causes, forms of disease, symptoms, diagnosis, treatment and prognosis.
Author: Prof. Dr. med. Holger Cario, created on: February 1st, 2012, editing: Ingrid Grüneberg, approval: PD Dr. med. Gesche Tallen, Prof. Dr. med. Ursula Creutzig, last changed: October 16, 2020
The ß-thalassemia is a congenital, chronic disease of the red blood pigment (hemoglobin) that accompanies those affected throughout their life. Hemoglobin diseases (hemoglobinopathies) such as ß-thalassemia are among the most common hereditary diseases worldwide.
If one takes into account the positive developments with regard to the continuously improved treatment options for the various health problems of the affected children and adolescents, it can be assumed that in the future more and more patients with ß-thalassemia will grow up with normal performance and reach the usual retirement age. It is important that the treatment is carried out by a specialized treatment team that works closely with family doctors and paediatricians. Comprehensive information and cooperation on the part of those affected and their relatives is also a prerequisite for a favorable course.
The following information text is aimed at children and adolescents with ß-thalassemia, their families, friends, teachers and other caregivers as well as the interested public. It is intended to contribute to a better understanding of the disease, the options for treating it and the problems and special needs of the patients concerned. Our information is not a substitute for the necessary clarifying discussions with the treating physicians and other members of the treatment team. However, they are intended to help prepare and better understand these conversations.
Notengen to the text
The information contained in this patient text has been created primarily on the basis of the literature given below and taking into account the current guidelines for the treatment of patients with thalassemia. The text was checked by the editors listed above in August 2018 and released for posting on the Internet for a period of five years. It should be checked again and updated after this period has expired.
Please note that the following are general information and recommendations that - given the complex situation - do not necessarily apply to every patient in their entirety. Many therapy recommendations have to be decided on a case-by-case basis by a team of specialists (interdisciplinary). Your treatment team will inform you of the measures that apply to you.
- Cario H, Kohne, E: Thalassemia, Guideline of the Society for Pediatric Oncology and Hematology. AWMF online [URI: https://www.awmf.org/ leitlinien / detail / ll / 025-017.html] CAR2010c
- Kulozik, AE: Thalassemia. In: Gadner, H, Gaedicke, G, Niemeyer, C, Ritter, J (eds.): Pediatric hematology and oncology, Springer Medizin Verlag 2006 [ISBN: 978-3-540-03702-6] KUL2006a
To download and save
Patient information on ß-thalassemia PDF file
ملف PDF للتنزيل والحفظ باللغة العربية
(Patient information on beta thalassemia in Arabic) معلومات المريض بيتا الثلاسيمياملف PDF
THALAS & ME
Information on YouTube
In short films, those affected and experts (Prof. H. Cario, Ulm, and Dr. R. Grosse, Hamburg) from pediatric hematology speak on various topics related to beta thalassemia. For example, topics are: What is Beta Thalassemia? When children or adolescents have beta thalassemia
Patient support group
Information provided by the Sickle Cell Disease & Thalassemia Association (IST e.V.) on the disease and public relations work of the association can be found here
SAM Germany e.V. Association for rare anemia
The association is based in Hamburg and works closely with the University Medical Center Hamburg-Eppendorf (UKE). The aim of the association is to improve the situation of those affected. Www.seltene-anaemien-deutschland.de
In this guideline, written for doctors, you will find further information on the diagnosis and treatment of alpha and beta thalassemia
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