For the first time the project gives voice to the world of donation, in its entirety and complexity, with the aim of offering support and information to patients awaiting transplant, to donors and to those who are considering registration in the IBMDR Italian Donor Registry. First episode aired on Friday 2 February, on the Spotify platform.
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 traveled counting on the support and information offered by the interventions of the protagonists of the episodes of the podcast “Cells, they tell their story”.
by Valentina Arcovio
Who collaborated on the project
Former patients, family members, specialists, support and assistance figures are the protagonist voices of “Cells, they tell their story”, the new accompanying project conceived and developed by the Italian Adoces Federation in collaboration with GITMO – Italian Group for Marrow Transplant Bone, hematopoietic stem cells and cell therapy and with the patronage of the Ministry of Health. The National Blood Center, the National Transplant Center, the IBMDR Italian Donor Registry and numerous patients, donors and specialists collaborated on the project. 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.
The project, the first in Italy to offer informative and psychological support to both patients and potential donors, sealing the “vital” relationship between one and the other, was presented on Wednesday 31 January in the Press Room of the Chamber of Deputies, at Palazzo Montecitorio, Rome.
“An honor for me – said theHon. Marina Marchetto Aliprandi, member of the Parliamentary Commission for Children and Adolescents of the Chamber of Deputies – host ADoCeS, a body that promotes Vita, at the Chamber of Deputies. Those who save their lives with the donation of stem cells do not give a gift to someone else but do it first of all to themselves, it is as if they were granting themselves the luxury of living twice and the Italian Federation of Hematopoietic Stem Cell Donor Associations has the great task of being the animator of initiatives aimed at an ever greater exchange between compatible people.
The podcast “Cells, they tell their story” that we present here has the intention of bringing us closer to donation thanks to the experiential story of those who wait and those who give in, an indissoluble bond that binds forever, for Life, just as it is the donation of the umbilical cord, rich in immune defenses, a practice that is still all too little known and which we have the task of encouraging through appropriate communication”.
by Tiziana Moriconi
The loneliness of care
“On behalf of the Social Affairs Commission of the Chamber I would like to thank Adoces because for the sick and the families who support them it is very important to be able to know the experiences of those who have lived and are living the same tragic experience. The loneliness of care that is often felt can certainly be alleviated by sharing. Information activities like this also help in raising awareness of donation, for which we are recording growth but not yet satisfactory data”, explained the deputy of Fratelli d’Italia Hon. Francesco Ciancittomember of the Social Affairs Commission of the Chamber of Deputies.
“Cells, they tell their stories” was born from a concrete need, which emerged from the story of the experiences of numerous former patients, who highlight the situation of loneliness and confusion experienced in the period preceding and following the transplant, and of the donors, who wish to be informed and accompanied in your choice.
by Deborah Ameri
A dialogue between all the figures involved
“For the first time, through this project,” he clarifies Alberto Bosihematologist 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, that talks about itself and mobilizes to be of help to the sick and to 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”.
“Allogeneic hematopoietic stem cell transplantation – he explains Massimo Martino, president of GITMO, – consists of 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 of “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. “”Cells, they tell their story” – adds the project coordinator and secretary of the Italian Adoces Federation, Alice Vendramin Bandiera – involves patients and donors and specialists 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.”
by Anna Lisa Bonfranceschi
The podcast “Cellule, they tell their stories” from February 2nd on the Spotify platform
The starting point. Every year in Italy, around 2000 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.
by Anna Lisa Bonfranceschi
What does a stem cell transplant consist of?
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. 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).
Goals. 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.
by Simone Valesini
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 podcast 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 healing 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.