2024-01-31 14:54:30
by Health Editorial Staff
Italian Adoces Federation in collaboration with GITMO launches «Cells, they tell their stories», to inform about the importance of the donation of hematopoietic stem cells through the voices of former patients, family members, specialists and other figures
The difficult path that leads to the hematopoietic stem cell transplant, or the one full of questions for those who would like to become a donor: these are two different paths, during which one often feels equally alone. From today, however, they can be followed by counting on the support and information offered by the interventions of the protagonists of the episodes of the podcast “Cells, they tell their story” which will start on Friday 2 February on the Spotify platform and a new episode will be released every Friday.
Former patients, family members, specialists, support and assistance figures are the protagonists of the new support project conceived and developed by Italian Adoces Federation in collaboration with GITMO – Italian Group for Bone Marrow Transplantation, hematopoietic stem cells and cell therapy and with the patronage of the Ministry of Health. The project collaborated with National Blood Centeril National Transplant Centeril Italian Donor Register IBMDR e numerous patients, donors and specialists. The National Office for Health Pastoral Care of the CEI – Italian Episcopal Conference also granted patronage and the creation and dissemination was possible thanks to the partnership with Seisnet and Rad-Uni, association of university radio operators.
Information and support
The project, the first in Italy to offer information and psychological support to both patients and potential donors, sealing the “vital” relationship between one and the other, was presented in Rome. «For the first time, through this project – clarifies Alberto Bosi, hematologist and president of the Italian Adoces Federation – a circularity is created, a dialogue between all the figures involved in the life-saving transplant procedure: it is the world of stem cell donation, in its entirety and complexity, to talk about itself and to mobilize to help the sick and support and stimulate donors”. «“Cells, they tell their story” – adds the project coordinator and secretary of the Italian Adoces Federation, Alice Vendramin Bandiera – involves patients and donors from many Italian regions. A dutiful thank you must be addressed in particular to the Veneto Region which immediately approved the program presented in the recent tender for the financing of third sector projects with resources from the Ministry of Labor and Social Policies”.
What is allogeneic stem cell transplant
«The allogeneic hematopoietic stem cell transplant (HSC) – explains Massimo Martino, president of GITMO, – consists in the reinfusion of HSC from a donor (the healthy subject) into a recipient (the sick subject) after the recipient has been “conditioned “, i.e. prepared with the administration of chemotherapy and/or radiotherapy and called “conditioning therapy”. It is a very delicate moment in the process of treating the disease, which will last many months and which will involve not only the patient, but his entire family.” People who undergo a transplant experience a chronic disease condition, which causes a change in daily life. Even after hospital discharge, their illness situation can generate limitations in the quality of life and favor a modification of roles and affections that are not always evident or, in any case, understandable to the rest of the family.
The starting point
Every year in Italy, approximately 2,000 procedures are activated in the IBMDR Italian Donor Registry to search for a compatible donor for patients being treated in haematopoietic stem cell transplant centres, procedures which allow a possible cure in the case of malignant haematological neoplasms (leukaemia, lymphoma, myeloma, myelodysplasia) and other hematological diseases (for example primary immunodeficiency, bone marrow aplasia). Allogeneic transplants (from family donors or from voluntary donors registered in the Italian IBMDR Donor Registry and from umbilical cord) reach an average of 1,800 every year. The transplant consists of the infusion of stem cells intravenously, after the patient has received a course of chemo therapy, sometimes in addition to radiotherapy, which aims to minimize the underlying disease.
Hospitalization after transplant
Post-transplant hospitalization has a variable duration, from two weeks to a month, and the stay is spent in sterile rooms, where the risk of contracting infections is reduced to a minimum. Hospitalization has the objective of treatment and, hopefully, recovery of the patient. But this condition brings with it the stress of a new situation that the patient, already weakened by the disease, must face: the hospital as a physical and social environment, the relationship with the healthcare personnel, the fears and the need to be reassured and, in some cases, psychological problems related to the disease and the transplant. On the donation front, in recent years the donation of hematopoietic stem cells by the compatible donor to the patient occurs in 90% of cases with the staminoapheresis procedure (collection of hematopoietic stem cells from the venous circulation of the arm). The donors registered in the Italian IBMDR Donor Registry are 496,754 (data as of 12.31.2023).
The objectives of the campaign
Knowing the path already taken by others, the strategies implemented by those who have “already been through it”, the point of view of experts, the commitment of donors can help patients not to feel alone and to bring out the inner strength necessary to overcome the disease in the best possible way. Not only that, «Cells, they tell their stories» is also aimed at those registered in the IBMDR Italian Donor Registry and at those who wish to get closer to donation: an accompaniment has also been designed for them, in particular with episodes dedicated to the experiences of donors who, with compatible results, have come to donate and will transfer their experience (to support young people who wish to become donors, the Federation has activated a monthly webinar on its Facebook page since January 2024).
The episodes
The program is conceived and implemented by the multidisciplinary working group of Adoces Italian Federation, composed of the scientific committee and communication experts, with the precious collaboration of the experts of GITMO – Italian Group for Bone Marrow and Hematopoietic Stem Cell Transplants. Each episode is a story, a “cell” that makes up the great mosaic of the treatment and recovery process: you can listen to the voices of people who have lived the experience of the disease and the transplant, who know its internal facets and psychological and who wish to make their journey available to others, the voices of donors who will bring their experience and who, with different reflections, can help young people develop an informed and conscious choice of donation.
There are also alternating insights from specialists in the sector (GITMO, National Transplant Center, National Blood Center, Italian IBMDR Donor Registry, etc.), as well as nurses who assist patients during their treatment phase. Every four episodes, the journalist and science communicator Davide Michielin offers a summary of the previous episodes, highlighting the key concepts. In addition to listening to the episodes, users will be able to ask questions and activate contacts through the social channels of the Italian Adoces Federation.
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January 31, 2024 (modified January 31, 2024 | 3:54 pm)
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