Pulmonary hypertension in SA, overlooked and misdiagnosed
- SA patients let their light shine to raise awareness –
November 2024
Worldwide, the month of November raises awareness of lung diseases, including the lesser-known condition, pulmonary hypertension (PH), for which there is still no cure. In the fight to improve diagnosis, treatment, the experience of living with PH and the advocacy for organ donations, it has proved essential for PH patients to tell their stories.
Cape Town teacher steps up on the PH platform
32-year-old mother and educator, Rafeeqa Lamera is the latest courageous PH patient in South Africa to let her light shine to raise awareness on behalf of South Africa’s PH community.
She says, “In 2017, I was diagnosed with PH, which changed my life forever. Although this was life threatening, I decided to pursue my dream of becoming a teacher, doing whatever it took to get my degree. There were many times when I was admitted to hospital, and I took my laptop with me so that I could either complete assignments for university or write my examinations. It wasn’t easy at all, but I had so much support from my family and friends.”
Rafeeqa notes that throughout her care she frequently encountered medical practitioners who had no idea of PH, a condition where instead of a smooth flow, arterial blood from the heart to the lungs is chronically constricted. This results in terrible breathlessness and physical weakness that is often misdiagnosed. There’s no cure for PH, though some medications and interventions can ease symptoms, but not all of them are available to South African PH patients.
Rafeeqa says, “I was on a regimen of many medications and interventions, which included needing extra oxygen, but none of these could improve my overall outcomes. Finally, in August 2022, I was put onto the lung transplant list, and in December that same year, I received a call saying that they found lungs! An extraordinary gift of more life that would help me raise my child. I underwent a double lung transplant and there were many complications. But I fought with everything I had, knowing that my son was waiting for me to come back home. I spent four long and gruelling months in the intensive care unit (ICU) at Groote Schuur Hospital. I was then offered a month at the Faircape Rehabilitation Centre, where I received amazing care and got to rebuild my strength. I was finally sent home after missing so much family and study time. The lung transplant enables me to keep parenting my remarkable boy, and to fulfil my dream of being a teacher for as long as I possibly can. Raising awareness of PH, though, can lead South Africa, and the world to more long-lasting solutions.”
The legacy of Jenna Lowe and the Get Me to 21 campaign
Patient advocacy for PH and organ donation in South Africa is rooted in the story of Cape Town’s Jenna Lowe and her extraordinary social media campaign, Get Me to 21. Diagnosed with PH as an otherwise healthy 17-year-old with no underlying conditions, Jenna’s PH story touched hearts across the country. Like Rafeeqa, her journey led to a much-needed lung transplant, but tragically Jenna did not survive this most arduous transplant surgery. She passed away just months before her 21st birthday.
The Jenna Lowe Trust was launched as her legacy, which then established the country’s first and only dedicated PH clinic at Groote Schuur Hospital. Today, the clinic supports over a thousand PH patients many of whom would have no other ways of accessing oxygen and mobility equipment or getting access to medication and treatments.
In 2023, the Trust released the documentary film, Get Me To 21 – The Jenna Lowe Story which went on to win international awards such as the Winner Best Feature Documentary at the IMDb Cannes Arts Film Festival 7th edition for 2024 and the Winner Best Feature Film at the IMDb Toronto Documentary and Feature Short Film Festival 2024. Get Me To 21 – The Jenna Lowe Story currently screens on SHOWMAX.
Jenna Lowe’s experience serves as a reminder that pulmonary hypertension is complex and it can affect young, healthy individuals without PH risk factors. Her advocacy has been crucial in raising awareness about this condition and improving support for PH patients in South Africa. While PH is often categorised as a rare disease, its prevalence and impact on public health should not be underestimated, particularly given the context of existing health challenges within the country’s population.
How can South Africans help?
Gabi Lowe, Jenna’s mother and the founder of the Jenna Lowe Trust says, “Firstly it’s important to be educated about PH, because all too often symptoms such as chronic breathlessness are too easily associated with more common causes. We lost years with Jenna due to misdiagnosis and we want other South African families to learn from our heartbreak. So, be aware that PH may be a cause of severe and chronic breathlessness, and when you are investigating these symptoms in yourself or a loved one, you need to connect with medical practitioners who know about PH.”
Gabi also recommends watching and sharing the documentary, Get Me To 21 – The Jenna Lowe Story on SHOWMAX. She says, “It really helps to understand this life-threatening condition and the importance of organ donation. Awareness can make a real difference in the lives of people like Rafeeqa who is devoted to raising her child and doing her utmost to still fulfil her dreams to educate South African children while she can”.
Gabi also emphasises that there are several ways that people can support the Jenna Lowe Clinic at Groote Schuur, which has developed as South Africa’s centre of excellence in the care of the country’s PH patients. She concludes, “Please consider donating unused oxygen and mobility equipment that can be distributed to PH patients who cannot access private medical insurance. You can also make financial donations that will further the Trust’s mandate to raise awareness, advocate for organ donation, connect our medical practitioners to global expertise and work to expand treatment options for South Africa’s PH patients.”
Support the important work of The Jenna Lowe Trust here
For more information about the condition please visit The Pulmonary Hypertension Association South Africa (PHS SA)