Article by Elizabeth Brierley
Elizabeth is originally from the UK and moved to Cape Town 9 years ago, where she fell in love with South Africa. She has a Masters in Paediatric Nursing from the University of Nottingham and a Masters in Public Health from the University of Cape Town. She has spent time working in rural areas throughout South Africa and has worked for the Human Milk Bank, Milk Matters for the past 7 years as well as being a lecturer at the University of Cape Town. Elizabeth started working for the Jenna Lowe Trust in 2014 and spent the last couple of years caring for Jenna and working with international specialists in the field. She now dedicates her time to educating healthcare professionals on how to diagnose and treat Pulmonary Hypertension (PH). Elizabeth also facilitates a monthly PH clinic at Groote Schuur.
Jenna Lowe was a bright, beautiful and courageous young girl who lived in Cape Town, South Africa. She had a gentle, yet strong, compassionate and engaging nature and lived a happy, healthy life until she was diagnosed with a rare, life threatening illness at the age of seventeen, Pulmonary Hypertension. Pulmonary Hypertension (PH) is a progressive, degenerative disease caused by the narrowing or tightening of the veins and arteries in the lungs. Sadly PH is often misdiagnosed and Jenna was already very ill by the time she started to receive treatment. By December of 2012 Jenna was living on supplemental oxygen 24 hours a day, sleeping for long periods throughout the day and was on a very complex drug regime. Nevertheless, incredibly, she graduated with seven distinctions and 11 academic prizes from her school.
By early 2014 Jen was urgently listed for a bi-lateral (double) lung transplant. Jenna’s family, who have always been heavily involved in her care and the advocacy of her condition, threw themselves into doing research. It was with dread that they realised South Africa has one of the lowest organ donation rates in the world.
“Only 0.3% of the population are organ donors. And yet there are at least 4,300 South Africans desperately awaiting a transplant on any given day”
The Lowe family acted quickly in an effort to transform the horrific situation with regards to organ donor awareness in SA by launching the ‘Get me to 21’ campaign. In its simplest form it was an invitation to the entire nation to attend her 21st birthday party. All you had to do to be there was sign up to be an organ donor. Incredibly the campaign went viral and the organ donation rates increased by an astronomical 287% in the first few months following the campaign.
Jenna received her lung transplant in December 2014 – however sadly after 6 long months in ICU recovering from the transplant, Jenna passed away on the 8th June 2015. Her dying wish was to encourage more people to become organ donors in SA. She also wanted to help other PH patients find treatment earlier and to start a lung transplant unit for state patients.
Jenna’s legacy lives on in the form of the Jenna Lowe Trust which acts as a voice for PH patients and advocacy for organ donation. There is a massive gap in support for PH patients and they are often left to deal with an overwhelming sense of isolation and confusion when first diagnosed. The Trust endeavors to fracture this by supporting one of the first PH clinics in South Africa hosted at Groote Schuur.
The Trust facilitates monthly support groups which enables patients to share coping strategies and receive emotional support from others who are facing the same predicament. Patient information leaflets have been created and distributed to patients around the Western Cape.
The Trust endeavors to act as an advocacy body for PH patients and by educating the public and healthcare professionals, patients can be diagnosed earlier and receive timely treatment and psycho-social support. The Trust also offers support to PH patients in the form of medical devices such as zimmer frames, medical ID bracelets and home oxygen so they can live as comfortably as possible with this debilitating condition.
The Trust continues to increase public awareness around the shortage of organ donors in South Africa, address misconceptions and drive registration. The Trust is also creating platforms that raise funds for, and donate money to, campaigns and projects that are directly related to Pulmonary Hypertension and Organ Transplantation in South Africa.
One of the most exciting endeavors is that Groote Schuur Hospital has invested in sending a senior pulmonologist to Australia to complete a Fellowship in Lung transplant medicine with an aim to potentially launch a program at GSH. This would make a dramatic difference to the lives of PH patients, as inevitably these patients will need a lung transplant and currently this is not available as a state service.
By registering to become an organ donor, one person may save the lives of up to eight people. Just take a few minutes out of your day to register; http://getmeto21.com/
For more info about the work that the Jenna Lowe Trust is doing you can follow this link: http://jennalowe.org/jenna/jennas-story/
Images courtesy The Jenna Lowe Trust