In 2014, critically ill with pulmonary hypertension (PH), Jenna Lowe captured hearts and minds in South Africa, and globally, with her acclaimed #GetMeTo21 social media campaign. She had been diagnosed with the rare disease, for which there is still no cure, when she was just 17 years of age. PH is a poorly diagnosed, incapacitating lung disease, and the only hope of longer-term survival may be a lung transplant. Beautiful, brave and bright, Jenna became a compelling, highly successful advocate for much-needed PH awareness and organ donation.
Tragically, Jenna passed away in 2015, just shy of her 21st birthday. To honour her legacy through helping other PH patients, her parents, Gabi and Stuart Lowe founded the Jenna Lowe Trust. Over the past ten years, the non-profit organisation has advocated for better diagnosis and treatment options in South Africa. It has brought global expertise to the country through its networking, collaborations and patient symposiums. The Trust also established a dedicated PH clinic in South Africa at Groote Schuur Hospital which helps patients access care, as well as breathing and mobility equipment.
Gabi Lowe says, “The time has now come for the work of the organisation to evolve under the leadership of the Pulmonary Hypertension Association of South Africa (PHA SA), which is a natural home for the Trust’s programmes. Jenna will always be the face of PH, and her story will live on with every PH patient who is helped by the programmes that are now well-established. We are so grateful for all the support we have had over the years – our donors, the local and international researchers and medical practitioners who we have engaged with us in the fight against this cruel disease.”
“Overseen by PHA SA, the Jenna Lowe PH Clinic co-ordinated by Nurse Hilary Barlow will continue delivering excellent patient services and providing expertise and support to PH patients and their families. The award-winning documentary, Get Me to 21 – The Jenna Lowe Story, will continue to air across Africa for the next three years on SHOWMAX and all Multichoice channels.”
As Gabi hands over the reins to PHA SA, accolades for her work at the Jenna Lowe Trust have poured in from across the world. Professor Luke Howard, a Consultant Pulmonologist working at the National Pulmonary Hypertension Service in London said: “It has been wonderful working with Gabi since 2018, and she can feel very proud of what she has achieved. She has put pulmonary hypertension on the map in South Africa, and her contributions have been felt globally.”
Like Gabi, Callista Greeff, Chairperson of the PHA SA is a parent of a child with PH. She says, “PHA SA and the Jenna Lowe Trust have collaborated for years, and it is an honour to receive the baton of their great work. There has been a great shift in the last decade in PH awareness, patient care and advocacy, and this is the absolute heartbeat of PHA SA. This handover strengthens our mandate and voice to ensure that our patients are heard and that we continue to advocate for them while creating awareness of PH in South Africa, as well as globally. The care and support that Sister Hilary gives to the patients really makes all the difference and we are proud to add the Jenna Lowe PH Clinic to our portfolio.”
Sister Hilary adds, “It is wonderful that the PHA SA is absorbing the Jenna Lowe Trust Liaison Nurse role as an additional offering of the Association. This will be a credit to PHA SA, with the patients continuing to have a go-to person when needed. It is significant that the number of PH patients referred to and seen at hospitals, by specialist consultants and registrars in training, has increased. As a result, patients are diagnosed and referred for appropriate treatment sooner. I find this so gratifying as it was Jenna and Gabi’s wish that knowledge and understanding of PH would improve, preventing the kind of misdiagnosis and delayed treatment that Jenna experienced. I am grateful for the opportunity to continue my involvement with the PH patients and their families around South Africa and in Namibia.”
To support this new era, PHA SA has recently appointed a new Treasurer who is skilled in Donor Relations Management and will amplify the organisation’s fundraising strategies. Patient Advocacy events have been planned for November, PH Awareness Month. This will provide opportunities to create digital assets that will be shared with medical schools and nurses’ training programmes. PHA SA also focuses on physical exercise support with cardiorespiratory physiotherapy partners to empower PH patients to move more and improve quality of life.
Callista concludes, “The enduring legacy of the Jenna Lowe story is that it has been a gamechanger for PH in South Africa, and globally. Boundaries of care shifted for the better because one family rallied behind their child and fought on her behalf for the best care and to amplify Jenna’s voice as a PH patient. As a mom of a PH patient, I deeply share that passion and determination. I admire what the Lowe family has achieved, and Jenna had an incredible impact because she fought this disease with so much character and intent. We are grateful to continue to build on the Jenna Lowe Trust legacy. We will keep challenging the status quo and advocating for social justice for our PH patients in public and private healthcare. As we take on this new mandate, PHA SA is committed to delivering strong foundations for patients, caregivers and the medical community. We can go further together!”
For more information about PH and to support their work, visit The Pulmonary Hypertension Association South Africa (PHS SA)
