Patient packs for families
We understand this is a new and daunting journey for you and we would like to reassure you that we will support and assist wherever possible. We hope that the information in this booklet will be both useful and informative as we explain the role of The Sunflower Fund and how, with your co-operation, we can build a bigger and better bone marrow registry for all patients now and in the future.
The Sunflower Fund understands how important it is for families to be proactive and to get involved and assist in promoting donor recruitment when a loved one has been diagnosed. We assure you that our organisation will do everything possible to facilitate this process. We would, however, appeal to you to follow the established procedures, which will allow you to spend more precious time with your loved ones during their treatment period. We are sure you can appreciate the importance of good donor recruitment as you would only want a fully committed donor to assist you.
What does The Sunflower Fund do?
The Sunflower Fund’s main function is to increase the South African Bone Marrow Registry (SABMR) so that patients who need a stem cell transplant can search successfully for a suitable donor. To be able to help all patients the Registry needs to grow! To achieve this we create awareness and educate donors and also pay for the costly blood test. To raise money for these tests we hold numerous fund-raising events throughout the year with Sunflower Day being held on the third Friday of September each year being the largest.
What does the family of the patient need to do?
First and foremost you need to be there for your loved one. If you have a question of a general nature or one regarding recruiting donors don’t hesitate to call our Call Centre (Monday - Thursday 08:30 – 16:30 and Friday 08:30 – 14:00) on 0800 12 10 82. Our experienced staff will gladly assist you or point you in the right direction.
How can the patient’s family help The Sunflower Fund increase the SABMR?
We ask you please to encourage friends and family to join the SABMR. Most donors on the Registry were motivated by someone they knew who required a bone marrow stem cell transplant. They realized that there were others in need and were prepared to help anyone if they did not match the person they knew. The commitment to help anyone is very important, without that commitment there would be no Registry; the larger the Registry the better the chance patients have of finding a suitable match. To join the registry it requires 2 test tubes of blood and then if they are a match for someone the process to harvest the bone marrow stem cells is like donating blood for 4-6 hours. No surgery is required! More information on donor recruitment can be found in our Donor Recruitment Information. It is very important that donors read and understand the information in the Donor Recruitment document.
What happens when family members don’t match the patient?
Any family members who have tested privately and specifically for a patient and who unfortunately don’t match the patient can (if they so wish) have their details transferred to the SABMR. This does not happen automatically. They have to complete and sign a transfer form which can be obtained from the SABMR or our Call Centre.
Please take note of the following:
- Press releases regarding donor recruitment should be issued by The Sunflower Fund only, to ensure accuracy of information.
- Patients awaiting transplants and their families should not be directly involved in donor recruitment – It is imperative to give interested parties the contact number of The Sunflower Fund Call Centre and allow them to handle the recruitment process – 0800 12 10 82.
- Donor information is strictly confidential (as directed by the World Marrow Donor Association – the body that regulates all unrelated stem cell transplantation) and will only be given to the SABMR by The Sunflower Fund.
- Searches for donors are only done by the SABMR at the request of a transplant centre and/or specialist physician.
- Patients must liaise with their doctors, for their own donor information, who will liaise directly with the SABMR. The Sunflower Fund only keeps demographic donor information and has no access to donor tissue typing or donor search information, which is strictly confidential.
- Donor confidentiality must be maintained at all times.
- Under no circumstances should anyone bepressurised into joining the bone marrow registry.
- It is very important that all donors are aware that they are joining the SABMR to help anyone who may need them, and not just the person who motivated them to join initially.
- Committed donors are critical, whether it be for your loved one currently or someone else in the future.
We understand that this is a difficult and very emotional time and most of our staff and volunteers have, in the past, been personally involved themselves and understand the urgency and emotion involved at this time. We have also found over the years, through hard lessons and international best practise, that the procedure that is currently in place is the most effective one to follow in order to get the best possible donors to help your family.
According to the South African Bone Marrow Registry (SABMR) hundreds of South Africans with blood diseases such as leukaemia reach the point where their only chance of survival is a stem cell transplant.
To download the Patient Information Pack for Families, click here.