World Kidney Day is celebrated around the globe on 10 March, focussing on kidney health for all. In keeping with this year’s theme, Transplant Education for Living Legacies (TELL) wishes to put the spotlight on living kidney donation. For someone who has End-Stage-Renal Failure (Chronic Kidney Failure) there are two treatment options available: dialysis or a transplant from a deceased or living donor. Due to Covid and a general shortage of organ donors, the rate of living donors has increased. Some transplant centres won’t list a newly diagnosed patient to the waiting list and their only hope for a transplant is a living donor. There are three types of living donors, living-related (blood – related), living unrelated (a family member or friend) and an altruistic donor.

Any person that wishes to be a living donor needs to be in perfect health and goes through extensive medical evaluation both physical and mental. This is to ensure that both the potential living donor and the recipient gets the best chance of a successful outcome. To be listed for a transplant, the recipient goes through a variety of tests and is assessed on an ongoing basis by their specialist. Only once the recipient has been cleared to be listed for a transplant, will the assessment of the living donor start. The work-up process for the donor is done in phases and can be stopped at any time if the donor changes his or her mind or if it comes to light that the donor has a medical condition that will prevent a transplant. Once all the tests are completed, the case will be presented at the transplant panel and once they approve the case will be referred to the Department of Health advisory committee for approval for a non related living donation or altruistic donation. South Africa is a signatory to the Declaration of Istanbul which prohibits organ trafficking and transplant tourism.

The Zane Project
TELL’s mascot, Zane the Zunicorn raises awareness about organ and tissue donation and teaches kids and adults alike how important it is to SHARE THEIR SPARE. Luckily for Zane, Zebra was able to share his spare and enabled Zane to live his life to the fullest with his Zebra leg. Zane was sponsored by Mascots SA – www.mascots.co.za and he tells everyone how being born different is ok. We found that by using Zane’s story, children understand organ and tissue donation and don’t find the concept frightening. Travis Kruger was gracious enough to agree to be our ‘Zane’. Travis is married to Fawn, one of the co-founders and Marketing Director of TELL.

Individuals and corporates shared their spare change and enabled TELL to raise funds for our Zane Project. Zane is an education toy made by the Rare Bear Project, part of Rare Diseases SA (https://rarebearproject.org)

Zane (aka Travis), Fawn and Stella visited the Paediatric Transplant Ward at Wits Donald Gordon Medical Centre in February this year to gift a Zane to the kids awaiting a transplant or recovering from one. He also made friends with the kids in the paediatric oncology ward. Zane gifted more than 23 educational toys to the kids to keep them company while in hospital. The children, their mothers and grandmothers were excited by their special visitor.

Transplant Education for Living legacies (TELL) is a NPO and PBO raising awareness about the importance of organ and tissue donation. We want to encourage the public to have the conversation with their loved ones about their wishes regarding organ and tissue donation.

The Zane Project will be visiting children in transplant units across Gauteng recovering or who are awaiting a transplant.

If you wish to share your spare change with us, you can donate via YOKO or via EFT:

Name: Transplant Education for Living Legacies NPO
Bank: First National Bank (FNB)
Account type: Cheque
Account no: 62818725775
Branch code: 250655

YOCO:
https://pay.yoco.com/transplant-education-for-living-legacies

For more information about organ and tissue donation, please visit TELL’s social media pages @tellorgza, website at www.tell.org.za e-mail: info@tell.org.za.

For photos of Zane’s visit, please refer to the link below.
https://drive.google.com/drive/folders/1-54QIV05hBf4hYrsB1Yo-lnwbndpBQs_

Additional Information
Kidney disease in South Africa

South Africa has one of the highest rates of end stage kidney failure in the world and a very low rate of organ and tissue donation and transplants. The lack of education in the medical field and the public at large around the situation is only making matters more difficult. Compared to other countries in the world, South Africa’s deceased donation rate is very low, Croatia has a rate of 30.2 per million population, where South Africa has less than three per million. Brazil has a rate of 14 per million population. Croatia was able to increase their transplant rate in a decade due to an integrated approach towards referrals and transplants.

It is also important to note that in South Africa, the donor’s family has the final say in whether or not
organs are permitted to be donated.

Health days such as World Kidney Day, celebrated on 10 March every year, present the ideal opportunity to address the issues concerning kidney health, kidney donation and transplants.

200 litres of fluid are filtered by your kidneys (2.5 bathtubs full) and excrete 1-2 litres of waste in a 24 hour period.

A kidney is the most frequently donated organ from a living donor.
Kidney disease in South Africa

● 10% of all people in the world have some form of kidney disease.
● 850 million people are affected by chronic kidney disease (CKD), with over 2 million people worldwide receiving dialysis or living with a kidney transplant.
● 15% of South Africans are affected.
● 20 000 new patients are diagnosed every year in South Africa.
● Two leading causes of Chronic Kidney Disease are diabetes and high blood pressure.
● South Africa has one of the highest rates of end stage kidney failure in the world.

Kidney Transplants in South Africa
● SA is one of 12 African countries that perform renal transplantation, and it is the only country in Africa that relies on deceased donation for the majority of its transplants.
● The first kidney transplant in SA took place in 1966, a year before the first heart transplant.
● The first dialysis in South Africa was done by a general practitioner that built his own dialysis machine in 1957.
● The overall 10-year increase in life expectancy of a kidney recipient compared to individuals on the waiting list.

Benefits of a kidney transplant include:
● significant improvement in physical functioning
● mental health
● social functioning
● overall perception of quality of life following a transplant.
Source: www.worldkidneyday.org and “Organ Donation from death to life” Dr David Thomson

Who is TELL?
TELL (Transplant Education for Living Legacies) was established in November 2018. Two of the three founders, Alice & Fawn, are double lung transplant recipients, and are therefore in a unique position to make a contribution to the transplant community. Stella has since joined the team and is currently on the waiting list for a kidney. She brings perspective from a patient who has been on the waiting list since 2012. Most of TELL’s volunteers are either waiting for a transplant or have received a transplant. Through awareness campaigns and education initiatives, they aim to lead the conversation surrounding organ and tissue donation in South Africa.

They are a registered Non-Profit Organisation (#219-134NPO) and a Public Benefit Organisation (930069136).

Who is Zane?
Zane was born different. He is a Unicorn that had an illness that made him feel sick and tired. As he grew up, he started to feel worse and worse until his doctors told him that he needed an operation. One of his parts was no longer working and he would have to wait for a stranger to give him a new leg. Zane waited patiently and one day a miracle happened. A spare part was found for Zane and the doctors could finally operate on him. It took some time for Zane to recover from the operation but soon he started getting his energy back. He felt better than ever and loved his donated zebra leg which had changed him from a Unicorn to a Zunicorn!

Zane now spends his days telling kids how important it is to SHARE THEIR SPARE and how being born different is ok.

What is Wits Donald Gordon Medical Centre (WDGMC)
WDGMC is the first private teaching hospital in South Africa and serves to supplement the specialist and subspecialist medical training provided by the University of the Witwatersrand.

What is the Paediatric Transplant Unit?
WDGMC’s Transplant Unit has established itself as a leading centre in liver, kidney and simultaneous kidney-pancreas transplantation.

Issued by:
Stella de Kock
Managing Director
Transplant Education for Living Legacies
stella.dekock@tell.org.za
0827852530

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