What is PTLD and what does it mean for me?
Post-transplant lymphoproliferative disease (PTLD) is a rare, but well-known complication of solid organ transplants and haematopoietic stem cell transplantation.1 PTLD is related to the Epstein-Barr virus and immunosuppression therapy.2 People who receive such transplants are subsequently treated with medication that suppresses their immune system.3
How does PTLD occur?
Post-transplant lymphoproliferative disorder (PTLD) is a type of cancer that can develop after a haematopoietic stem cell transplantation (also known as a bone marrow transplant) or after a solid organ transplant.
PTLD is a rare disease.
PTLD is considered a rare disease (i.e. occuring less that 1 in 2,000 patients, based on the official definition of rare disease of the European Union4) which occurs in a small percentage of transplant patients.
PTLD outlook.
Although PTLD can often be successfully treated when diagnosed early5, the disorder can place an additional medical and psychological burden on transplant patients due to its rapid progression.
Immunosuppression.
The compatibility between the donor and the patient, particularly in stem cell transplantation, is an important aspect because it affects the levels of immunosuppression required.
PTLD and EBV.
PTLD is sometimes associated with Epstein-Barr virus (EBV) infection. EBV is a common herpes virus that does not usually cause problems in people with standard immune systems. In immunosuppressed post-transplant patients, however, EBV infection may remain uncontrolled and eventually lead to PTLD.6
Effects of EBV.
PTLD can be caused by reactivation of the patient's EBV or by reactivation of the donor's EBV.7 This causes uncontrolled growth of cells in the patient's lymph nodes and other organs, which can lead to the development of cancer.
Support
Find PTLD patient support near you
Use the interactive map to find relevant PTLD patient group support organisations in your country.
Germany
Leukämiehilfe RHEIN-MAIN e.V
Germany, Ruesselsheim
Website: https://www.leukaemiehilfe-rhein-main.de
Email: buero@lhrm.de
Phone: +49 (0) 6142-32240
Portugal
Associação Portuguesa de Insuficientes Renais
Portugal, Lisbon
Website link: http://www.apir.org.pt/
Email: apir@apir.org.pt
Phone: +351 218 371 654
Spain
Asociación Española de Ayuda a Niños, Adultos y Familias con Fallo Intestinal, Nutrición Parenteral y Trasplante Multivisceral
Spain, Madrid
Website: www.somosnupa.org
Email: ayuda@somosnupa.org, comunicacion@somosnupa.org
Telephone: +34 91 022 58 38
Spain
Federación Nacional de Enfermos y Trasplantados Hepáticos
Spain, Madrid
Website: www.fneth.org
Email: secretaria@fneth.org
Phone: +34917 396 872
Poland
Alivia Cancer Foundation
Poland, Warsaw
Website: www.alivia.org.pl
Email: info@alivia.org.pl
Phone: +48 22 266 03 40
Europe
Website: https://ekpf.eu
Email: info@ekpf.eu
Telephone number +34915610837 (Administrative Office – SPAIN)
Italy
Unione Trapiantati Polmone - Padova ODV
Italia, Padova
Website: www.oltrelamalattia.it
Email: info@oltrelamalattia.it
Phone: +39 3494411887
France
Ensemble Leucemie Lymphomes Espoir
France, Paris
Website: www.ellye.fr
Email: infos@ellye.fr
Phone: +33 01 42 38 54 66
Learn more about PTLD
Explore tools and resources to help understand PTLD.
This website is developed and fully funded by:
This website is intended for patients and carers within the European Union.
HQ--11-23-2300001 Date of elaboration: March 2024