New NPO encourages people to tell their families about their wish to become organ donors

A team of women who want to give hope to those in need of organ transplants have started their own non-profit organisation, Tell (Transplant Education for Living Legacies).

It was founded to encourage people to inform their families that they would like to become organ donors one day, thus ending the waiting list.

The organisation was launched at an exclusive cocktail dinner hosted at Hollard in Parktown on 16 October.

Two of the three Tell founders were recipients of life-changing bilateral lung transplants, allowing them to identify various barriers to organ transplantation.

Managing director and co-founder Alice Vogt said, “Our goal is to first educate both potential donors and medical healthcare professionals, and break the stigmas and misinformation around organ and tissue donation.”

The organisation aims to encourage anyone who wants to donate their organs to tell their tribe (family and friends) about their wishes so that they can become organ donors and educate people to change the organ and tissue donation culture in South Africa.

Vogt explained that she suffered from cystic fibrosis, and in 2008 received her first bilateral lung transplant, giving her the chance to live a normal life. “I was able to go to work and gym, I participated in two world transplant games, it was life-changing… Exactly a year ago, I became the first person in South Africa to undergo a second bilateral lung transplant. Without those two donors, I would have missed out on so much,” she added.

Critical care physician at Milpark Hospital Dr Paul Williams addressed those in attendance, highlighting the fact that the real heroes of today are the organ donors who give people the gift of a second chance. “The even greater heroes are the recipients who go through a horrific process and show bravery, trust and faith. They should be able to tell other people about their stories,” said Williams.

Nephrologist and son of a kidney recipient Dr Shoyab Wadee, who works at the Wits Donald Gordon Hospital, pointed out the challenge of being on a waiting list when an individual is in need of a kidney.

“The list of those living on dialysis continues to increase in South Africa… Patients who receive transplants live longer than those on dialysis, in Johannesburg the average person lives over 10 years longer. We need to create a culture of altruism in South Africa to change this,” he said.

According to Tell, while people can register as organ and tissue donors in South Africa, doctors and families are not made aware that people have registered, thus rendering the process invalid.

Because of South Africa’s model of expressed consent, it is vital that loved ones are made aware of their family member’s desire to become a donor.

Details: Like the TELL Facebook page @tellorgza.