First ever SA PH patient-centred symposium to be held in Cape Town
In 2014, two years ahead of her 21st 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.”
Living with the absence of a cure – Dineshree Naiker’s Story
In 2019, Dineshree Naiker, a busy top executive in the pharmaceutical industry began to experience a debilitating shortness of breath and extreme fatigue at the slightest exertion. A range of examinations and tests eventually determined that she had PH that had developed because of a previously undiagnosed congenital heart condition. This is known as Secondary PH, and it is unusual in the experience of PH patients as often underlying reasons for onset of PH are never determined.
Dineshree, who has been married for over 20 years and has two adult children remembers the shock of her diagnosis and describes the challenges she faces four years later: “The condition was one that I was familiar with through my work, and the diagnosis left me entirely bewildered and in a flat spin. The challenges faced by a PH patient are plentiful and all very impactful, from living with the magnitude of the absence of a cure to facing an array of severe limitations in the medical sector – there’s limited research funding and a lack of patient databases which means there’s a lack of adequate, clear, and predictable information on disease trajectory, patient prognosis, and timelines. PH patients who are fortunate enough to have medical insurance still face inadequate funding, for instance my allowance for PH medications runs out by March each year, and I have to fully fund expensive meds for the rest of the year. You must learn to live with lifestyle limitations and disabilities due to chronic shortness of breath. But by far the greatest challenge I deal with is facing my own mortality and learning how to choose life each day. My diagnosis was a shock to us all initially, and it took us all, each individually and jointly, some time to understand it and learn to navigate it, but as a family, we’ve learned to not take one another for granted and to love every single day we wake up to.”
PH-ighting this hard, for my son – Rafeeqa Lamera
Shortly after she had given birth to her son in 2016, Rafeeqa began to experience extraordinary breathlessness, even when walking just a short distance. She sought medical help, but it took months, and an array of consultations with four different doctors before she was diagnosed with PH at Groote Schuur Hospital. She says, “The biggest challenge was adaptation and accepting that I was no longer who I used to be. I couldn’t do what I used to. Everything was hard, it was so frustrating knowing that a few months ago I could do something, then suddenly the simplest things made me tired and breathless.”
Rafeeqa credits the PH support group at the Jenna Lowe Clinic with providing essential care to patients. She says, “It’s so good being able to speak to people who are battling with the same disease as you. I feel that it is very important to be part of a support group, as others around you have no idea what you are going through. I would advise someone who has been recently diagnosed to join a support group. They should know that the road ahead will be a tough one, physically and emotionally. They should know that their whole life is going to change, they will not be capable of doing certain things that they could do. Some people might say that you are not really sick because you look fine, but they should ignore those people. Pulmonary hypertension is real, the breathlessness is real, the pain is real. Just because you don’t look sick, doesn’t mean that you aren’t.”
On the 5th of December 2022, Rafeeqa finally got the long-awaited, potentially life-saving call. She says, “At the moment, I am 4 months post-lung transplant and currently at a rehabilitation facility, working hard to regain my strength. My son, Ahyaan, started grade 1 this year. He is full of energy, always happy and just an amazing little boy who brings me so much joy. He is my reason for fighting this hard. I enjoy being outdoors, going to new places, trying new restaurants. Unfortunately, PH has held me back. But now with my new lungs I am going to take advantage of every opportunity I get.”
World Pulmonary Hypertension Day 2023 will be held on 5 May to celebrate the lives of PH patients around the world. While the profile of PH has been raised significantly over the past decade, patients and their families are setback by delayed diagnoses, and there are great strides still to be made in the advocacy for affordable medications, improved treatments and holistic care.
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)