Trust gives hope to sufferers of rare disease
ORGAN donor and social activist Jenna Lowe’s legacy lives on through the trust established in her honour which continues to save lives.
Lowe suffered from pulmonary arterial hypertension (PH) – a rare degenerative disease that took doctors two years to diagnose accurately.
Before she died, she started the Get Me To 21 campaign, which encouraged people to sign up as organ donors.
After Lowe’s death, her parents vowed to raise awareness of PH in South Africa.
Through the Jenna Lowe Trust (JLT), with Lowe’s pulmonologists Dr Greg Symons and Dr Greg Calligaro, a specialist PH treatment clinic has been set up at Groote Schuur Hospital for state and private PH patients.
The clinic currently treats 68 patients and provides treatment and counselling for PH patients.Treatment for the con-
Jenna Lowe suffered from a rare degenerative disease called pulmonary arterial hypertension, which led to her needing a bilateral lung transplant.
dition can range from R5 000 to R100 000 a month.
A success story to come from the unit is that of Bridget Nkonyeni, who was transferred from Chief Albert Luthuli Hospital in KwaZulu-Natal. She needed a thrombectomy, which was successfully performed.
Gabi Lowe, Jenna’s mother and co-founder of the JLT,
said: “Jenna’s PH diagnosis was overwhelming, especially when we realised that so little is known about the disease. We were shocked, confused and frightened – we had to cope daily with whatever the disease threw at us.
“We vowed that after our experience with Jenna’s disease, things had to change; PH patients, their families, their friends and healthcare professionals needed support to make this disease manageable and improve healthcare around it. We knew that driving awareness of this underdiagnosed disease for future patients was vital to change the landscape for other patients.”
Symons says it is rewarding to be a part of Lowe’s legacy.
“She brought the critical need for a tertiary specialist clinic for PH into focus. With the support of the divisions of pulmonology, cardiology and pharmacology, the Groote Schuur PH clinic has been running successfully for almost two years now. We provide hope, support and treatment to the patients we treat here in the Cape,” Symons said.
PH is a chronic, progressive, degenerative illness and patients often require lung transplants in order to live. Early common symptoms include shortness of breath, chest pains, swelling of ankles, and dizziness.