SA bone marrow registry empowers patients with newly launched guide book

Johannesburg - South African stem cell transplant patients will now have easier access to detailed information about their pre-and post-transplant journey following the launch of a three-part Patient Guidebook on Allogeneic Stem Cell Transplantation by the South African Bone Marrow Registry (SABMR).

The guidebook, collated from various medical sources including transplant centres and various registries, will be downloadable via a QR code or can be obtained in print form from the treating physician. It aims to help patients navigate their transplant journey providing them with information on how to prepare for the stem cell transplant, admission to hospital and the post-transplant recovery journey, which can take several months.

Zaahier Isaacs, Head of Patient Services for the SABMR says, while information has always been made available to patients in the past, the new guidebook serves as a comprehensive resource for patients and families, which answers questions they may have at any stage of the transplant.

"The guidebook is a transformative resource, which has been developed in response to dozens of interviews with past patients and family members. It addresses their need for information in a more accessible format to better prepare for the transplant journey. By incorporating learnings from real-life experiences, the guide provides practical advice, emotional support and a comprehensive overview of what to expect before, during and after the procedure, ensuring patients feel informed and empowered every step of the way.

The three-part series collated by the SABMR and endorsed by the Blood SA Foundation is written in an easy-to-understand format with graphic illustrations simplifying complex explanations.

Earlier this year, the registry started distributing tailored care packs to occupy and bring comfort to transplant patients while they are isolated before and after their transplant. Isaacs says the addition of the guidebook in the care packs is another way of showing support, reminding patients and families that they are not alone in their journey.

"Beyond the physical effects of the procedure lies a deeply emotional journey, one marked by fear and anxiety of the unknown. Making this resource readily available to patients and families, is our way of giving them the assurance that healing both physical and emotional is possible during this complex journey," says Isaacs.