More than a decade ago it took 18 months to diagnose Jenna Lowe (17) with pulmonary hypertension (PH). Pulmonary hypertension is different from hypertension in that it is dangerously high blood pressure that occurs only in the lungs, impacting not only breathing, but heart health.
There is still no cure beyond organ transplants. Lowe died in 2015 just three months before her 21st birthday.
According to Dr Gerald Maarman, from the Centre for Cardio-Metabolic Research in Africa at Stellenbosch University, the prevalence of PH in Africa, can range from 10% to 68%.
“It is estimated that 75 million people worldwide suffer from PH. However, that could be higher in reality as PH is frequently mis- or undiagnosed.”
Very little was known about the deadly disease before the Cape Town teen set her mind to raising awareness of how the onset of PH completely changed the course of her life.
A legacy live on
To celebrate the journey to a milestone birthday, Lowe set up a social media campaign she called “Get me to 21” to raise awareness on the struggles of living with PH and advocated for the research of improved care and organ donation. Today her legacy lives on through the Jenna Lowe Trust.
“We started the clinic in 2015 as a place of hope for patients and their families,” said mother of the late teen, Gabi Lowe.
The Jenna Lowe Trust exists to continue Jenna’s legacy and the work she did to raise awareness on pulmonary hypertension for patients in Mzansi.
“Jenna’s heart-breaking journey with this cruel disease was made harder because we struggled to access the expertise and help she needed. It is her powerful legacy and wish that it shouldn’t be this way for other South Africans suffering with PH.”
The Jenna Lowe Clinic currently serves almost 500 patients at the Groote Schuur Hospital in Cape Town and is also a hub of training and international engagement for the medical profession.
The Jenna Lowe Trust provides the clinic with the services of Nurse Hilary Barlow, and it is overseen by Dr Greg Symons. Barlow says, “With fundraising support from the public, we are able to help patients who would otherwise not be able to afford high-cost equipment such as oxygen concentrators and mobility support in order to give them better quality of life.”
What it’s like to live with PH
According to Maarman, the symptoms of PH are marked by breathlessness, as shared by other more common lung conditions like asthma.
“This is why it is so important for South Africans to be aware of the condition so that they can request the tests for PH should they suspect they might have it.”
Rafeeqa Lamera (30), a Cape Town mother, was diagnosed with PH in 2016, and is a patient at the Jenna Lowe Clinic. Lamera uses an oxygen concentrator which enables her to manage daily life and helps to reduce damage to her heart.
“Despite being diagnosed with this life threatening disease, I am pursuing my dream of becoming a teacher, and I am in my final year of studying. I am dependant on many medications, which includes concentrated oxygen, but unfortunately, there is no cure for this disease. However, if I successfully undergo a lung transplant surgery, I will be able to live a normal life for a number of years.”
Lamera has a TikTok account ‘phighter2016’, where she posts videos of what her life is like living with pulmonary hypertension.
Look out for these symptoms
Callista Greeff, mother of a young son with PH and chairperson of the Pulmonary Hypertension Association of South Africa (PHA SA), says “South African PH patients have so many needs including access to doctors who specialise in PH, as well as early detection, diagnosis and the correct treatments.”
According to the Jenna Lowe Trust, early diagnosis is vital as it can have a significant impact on your health, quality and length of life. It is important not to ignore the following symptoms:
- Breathlessness or shortness of breath, especially during physical activity
- Chest pain known as angina pectoris, especially during physical activity
- Dizziness or lightheadedness, especially when climbing stairs or standing up
- Fainting
- Swollen ankles, legs, or abdomen, which is also called oedema
- Loss of energy and feeling tired all the time
- Dry cough
- Raynaud’s phenomenon, which is chalky white or dusky blue fingers that may be painful and can sometimes be provoked by the cold.
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