Awareness Increasing For SA Pulmonary Hypertension Patients

Picture: Jenna Lowe

First ever SA PH patient-centred symposium to be held in Cape Town

In 2014, two years ahead of her 21^st birthday, Cape Town teen Jenna Lowe, a pulmonary hypertension (PH) patient, launched the #GetMeTo21 campaign to raise awareness of this rare, life-threatening disease and to drive organ donation in South Africa. 

The campaign raised an extraordinary awareness of this poorly understood, often misdiagnosed disease, and would gain international acclaim and win awards. Tragically, it could not save Jenna, who passed away three months before her milestone birthday.

However, her legacy, the Jenna Lowe Trust, has forged onwards, making both a national and global impact.  This year, a 90-minute documentary, ‘Get Me To 21 – The Jenna Lowe Story’ has been completed and had a successful big-screen premiere. Negotiations are now underway for its release on local and global streaming platforms. In tandem with the Pulmonary Hypertension Association of South Africa (PHA SA), the Trust will also be co-hosting South Africa’s first-ever PH Patients’ Perspective Symposium bringing together both local and international experts in the diagnosis, treatment and management of PH.

In the spirit of Jenna Lowe, who bravely shared her story across the media and social media at an excruciatingly vulnerable time, South African PH patients will have a platform at the Symposium to share their stories with medical practitioners in the effort to raise awareness and advocate for improved patient outcomes; as well as discuss and explore ways in which a patient can empower and help themselves when living with a chronic illness.

While PH is regarded as a rare disease, it is so often misdiagnosed or undiagnosed that University of Stellenbosch researchers have estimated the prevalence of PH in Africa may range from 10% to 68%. It is estimated that 75 million people worldwide suffer from PH. Many of the symptoms of PH, which is marked by breathlessness, are shared by other more common lung conditions, including asthma. Unfortunately, there is still no cure for PH beyond organ transplants, however, early diagnosis and treatment can now greatly change the quality and length of a patient’s life.

In 2015, the Trust helped to establish The Jenna Lowe PH Clinic at Groote Schuur under the leadership of Dr. Greg Symons, and it continues to fund the services of Nurse Hilary Barlow who oversees around 500 PH patients. It has also tirelessly advocated to improve access to PH treatments and awareness of the disease.

Only a few treatments are available in South Africa, and they remain prohibitively expensive for most South African PH patients. The Jenna Lowe Trust also raises funds to help provide medical equipment for PH patients who need oxygen equipment and mobility solutions. The Trust has also engaged with medical bodies and PH patient communities on an international level to bring awareness of current best practices in the diagnosis and treatment of PH to the South African healthcare sector.

Director of the Jenna Lowe Trust, and mother of Jenna, Gabi Lowe says, “Jenna’s patient story has helped to galvanise advocacy for more engagement from the medical community to determine improvements in PH care and accessibility to treatments. So, we are true believers in the power of patient stories to bring about positive change. Her story will live on, now in the form of the documentary which will soon have a global platform. In addition, by putting patients at the centre of South Africa’s first PH Symposium, we are building on Jenna’s legacy of courage and hope in the face of a cruel disease to focus attention on the urgent need for improved patient outcomes.”

The PH Patients’ Perspectives Symposium will take place on 13 May 2023 at the Faircape Health Estate in Tokai Estate, Cape Town. Dr. Symons of the Jenna Lowe Clinic at Groote Schuur, the country’s first dedicated PH medical unit, will provide an overview of their ground-breaking work and learnings. Leading pulmonologists, Dr. Paul Williams from Johannesburg and Prof. Greg Calligaro from Cape Town will share insights into lung transplantations as the uncertain, but only known PH cure.

Professor of Psychiatry at UCT Jackie Hoare will talk about mental health and living with a chronic condition and a panel of allied health professionals will join a panel discussion around patient empowerment. These top South Africa medical practitioners will be joined by USA expert, Prof. David Badesch, a pulmonary disease specialist from the University of Colorado Hospital in Denver.

Lowe says, “The symposium is bringing these leaders in fighting PH together to inform, share insights and find opportunities for further collaboration to support patients.  However, an important aspect of the Symposium is that certain patients assisted by the Jenna Lowe Clinic will have their opportunity to tell their powerful stories.  This is an opportunity to raise further awareness of the importance of improving their access to medications and support equipment, as well as the role of rehabilitation such as physiotherapy in improving their quality of life.”

The PH Patients’ Perspectives Symposium 2023 takes place:

• 13 May 2023
• Faircape Health in Tokai Estate, Cape Town
• To book a ticket for yourself, a PH patient or carer follow this link: https://www.quicket.co.za/events/212017-ph-patients-perspective-symposium-2023/
• Support the important work of The Jenna Lowe Trust here  
• For more information about Pulmonary Hypertension please visit The Pulmonary Hypertension Association South Africa (PHS SA)