Jenna’s legacy endures
Her trust supports one of the first dedicated PH clinics in SA
WELL-KNOWN to many South Africans as a young campaigner for organ donation, Jenna Lowe’s legacy lives on. Lowe died last June at the age of 20 following complications arising from pulmonary arterial hypertension (PH) and the challenges of having had an organ transplant.
But more than a year on, her short life continues to inspire others through a trust formed in her honour, helping those who live with the disease to cope better.
The Jenna Lowe Trust, which acts as a voice for PH patients and advocates for organ donation, now supports one of the first dedicated PH clinics in SA – the Groote Schuur PH clinic – by raising awareness and providing equipment to sufferers of this respiratory disease.
Speaking on behalf of the trust, Elizabeth Brierley said often there was 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”.
She said the trust facilitated monthly support groups to enable patients to share coping strategies and to receive emotional support from others facing the same challenges.
It also wrote and printed the first PH patient information leaflets in South Africa that are now distributed to patients in the Western Cape in three languages.
“It endeavours to act as an advocacy body for PH patients because by educating the public and healthcare professionals, patients can be diagnosed earlier and receive timeous treatment and psycho-social support,” she said.
In the past year, the trust has been able to buy medical devices desperately needed by patients at home, such as oxygen concentrators and mobility devices.
“The trust continues to increase public awareness around the shortage of organ donors in South Africa, address misconceptions and drive registration,” she said.
Lowe, who had been the centre of the “Get Me To 21” campaign which encouraged people to sign up as organ donors, died last year, three years after being diagnosed with the rare lung disease and six months after a bilateral lung transplant.
By June last year, about 5000 people had registered following her campaign.
PH, which is a progressive, degenerative disease caused by the narrowing or tightening of the veins and arteries in the lungs, is receiving attention this month as October is Pulmonary Hypertension Awareness month.
Patients describe the disease as having a constant sense of suffocating or drowning as they struggle to breathe normally.
For more information on PH and the work of Jenna Lowe Trust, visit wwww. jennalowe.org
PATIENTS SAY PH IS LIKE HAVING A CONSTANT SENSE OF SUFFOCATING OR DROWNING