For patients undergoing a bone marrow stem cell transplant, the journey is one of hope, healing and sometimes, a profound desire to connect with the anonymous donor who gave them a second chance at life. But when and how can that connection be made?
About the SABMR
The South African Bone Marrow Registry (SABMR), a non-profit organisation, was established in 1991 to ensure that South African patients in need of transplants are not limited to finding a donor within their family. A patient requiring transplant has a 30% chance of finding a match within their immediate family the other 70% has to look to the kindness of a stranger to find a suitable match for a second chance at life.
Today, more than 30 years later, the SABMR searches both locally and globally to find matching donors and follows strict international protocols to ensure safety and compatibility.
Beyond searching for matches, the SABMR also plays a crucial role in donor welfare and facilitating the meeting between donor and patient when the time comes.
What is a stem cell transplant?
A bone marrow stem cell transplant (BMT) is a life-saving procedure in which healthy blood-forming stem cells are infused into a patient’s blood stream to replace diseased or damaged bone marrow caused by various life-threatening blood diseases.
These healthy cells are critical as they go on to produce red blood cells (which carry oxygen), white blood cells (which fight infection) and platelets (which help with clotting).
There are different types of BMTs:
- Autologous: using the patient’s own stem cells,
- Allogeneic: using stem cells from a donor (related or unrelated), and
- Syngeneic: using stem cells from an identical twin.
This treatment is commonly used for conditions such as leukaemia, lymphoma, aplastic anaemia and certain immune disorders. The process is complex and recovery can take months, but for many, it is the only hope for long-term survival.
Communicating with your donor post-transplant: What you need to know
Once a patient has recovered, many feel a deep sense of gratitude towards the person who saved their life and want to thank them for their selflessness. Some patients are curious wanting to know more about their donor, what they are like, what their every-day lives look like and most importantly, why they chose to register and donate their stem cells.
While the SABMR recognises this emotional need, the registry has to carefully manage how and when contact is made. Here’s how the process works:
Anonymous contact with your donor
In the months or years following a transplant, patients may send anonymous messages to their donors via the SABMR. These messages contain no names, personal details or identifying information – just words of thanks or updates on recovery. The donor also has the option to reply anonymously.
This anonymous communication offers a way to connect while protecting privacy on both sides during a critical time of healing.
Direct contact after three years
In South Africa a patient can request direct communication with their donor through the SABMR three years post-transplant
This process is dependent on several conditions:
- Patients health status: A patient’s physician has to confirm that they are healthy enough, both physically and emotionally for direct contact.
- Donor consent: The donor must also give their written consent. Even if a patient is eager to make the connection, the donor has the right to decline and their decision should be respected without judgement.
- SABMR approval: If both parties agree, the SABMR’s Donor Welfare Officer will facilitate the exchange of contact details and may even co-ordinate and attend the first meeting between the patient and donor.
The SABMR believes in the power of human connection, but also in the importance of consent and privacy. Whether a patient meets their donor or only knows them through an anonymous message, the impact of that donor’s decision to help remains immeasurable.