Patient Stories


The articles below are written by South African PH patients and family members of PH patients.

PHASA Memorial



My name is Sandra Small, and I am 60 years old. I have a daughter, Shanna, who is 34, and a granddaughter who will be three years old in May.

I have always been a fairly active, health-conscious person. I have never smoked, have always eaten a reasonably healthy diet, and exercised in moderation. I love the outdoors; hiking and bird watching were some of the things I enjoyed most. Over the years we hiked all over South Africa, but my favorite one will always be the “Otter Trail” from Storms River Mouth to Nature’s Valley in the Western Cape. Not only was it my best, but also sadly my last.

I was diagnosed with pulmonary hypertension in October of 2000, after collapsing on a short hike at Suikerbos Rand near Heidelberg, Gauteng in August of the same year. At the time a lung transplant was the only solution, and life expectancy without it, or supplementary oxygen, was two to five years. I was told to stop all physical exercise.

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Pulmonary arterial hypertension (PAH) is a chronic and currently incurable disease, in which the right side of the heart works harder to pump blood through narrowed arteries to the lungs. Ultimately, this extra stress causes the heart to enlarge, and the heart’s ability to pump blood from the heart through the lungs and into the rest of the body is hindered.

We regularly hear, “but you do not look sick.” That’s not necessarily the case. We use disabled parking because we get out of breath quickly when we have to walk long distances. General activities, like climbing stairs or walking on the beach, can cause us to be out of breath. We have come a long way since my PH diagnosis ten years ago in September, 2007. Currently, there are 14 FDA-approved medications in the world, but only two are available to me in South Africa. Our goal is to make people more aware of this situation and hopefully to bring more medications and a better quality of life to those affected by this terrible disease.

In August 2008, I made an appointment with Dr. Paul Williams, for a possible lung transplant. When I arrived at the hospital, Dr. Williams told us the South African Medicine Control Council had approved a trial drug, Macitentan, and he wanted to see if the trial medication could work for me before looking at a double lung transplant.

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Carmen Miller

Tylor Miller

My Name is Carmen Miller, this is not my story but that of my 9 year old little boy.

My son Tylor was born a healthy normal little boy on 17 February 2004, or at least so we thought. After about three months of his birth I started noticing something strange in Tylor’s behaviour in the early hours of the mornings. Being a first time mum I had no idea what to look for much less what to be aware of.

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My son Eben was born with a condition called Bochdalek Hernia, in which there is a hole in the diaphragm and the abdominal organs move up into the chest cavity. It is a very rare condition, especially because his liver also moved up, and this only happens in 2% of the Bochdalek cases.

Eben was born on April 2, 2013 at 38 weeks and was immediately put on an ossillator (a type of ventilator) to help him breathe in the Neonatal ICU. After three days, he was stable enough to operate on. The doctors were able to move his liver and intestines into correct positions, and repair his diaphragm with a prosthesis.

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Hi. I’m Nicole Coutinho and I was diagnosed with Primary Pulmonary Hypertension in 2006. At age 17 turning 18, you wouldn’t expect your life to take such a drastic turn, but it did.

At the time I was experiencing shortness of breath and excruciating chest pain. I told my mom and the next day we went to go see our family GP, and for me, my 1st guardian Angel- Dr Leisher. Dr Leisher discovered that I had a heart murmur. Having no knowledge of what a heart murmur was at the time, we completely freaked out! So, we were sent to my 2nd guardian Angel- Prof. P Sareli at Mulbarton Hospital. That was the day our lives did a total 180.

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So… it all happened about a year ago when I became really ill with a fever and my entire body was in a shaking state. I was admitted immediately upon arrival at the hospital and the very next morning I was told that I have a severe kidney infection… in my mind at the time I was convinced that I would be out of there within two or three days at the most.

After two days my physician came in and told me that he had found some irregular readings on an ECG and he would like to run some further tests with other doctors. Two days later I was seen by a pulmonologist who told me I might have a condition called pulmonary hypertension. I remember thinking “What?” … and I quickly asked him to write down the name, as I knew I would not remember it. He was waiting for some scans and he would confirm… when he came back he confirmed… my head felt like it was spinning… my stomach felt twisted and I just began to cry… I could not understand why… I had a million and one questions.

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Where did all this begin, I don’t really know ~ for as long as I can remember I was a sickly frail child always down with one thing or another, always fainting for no apparent reason ~ back in the day, living on an asbestos mine in what was then Southern Rhodesia in the middle of nowhere with only one doctor, I cannot ever remember my parents taking me to the doctor because I was always fainting, it was just considered normal for me.

At age19 I moved to South Africa and got married, but sadly my health issues continued, and I became totally disillusioned with the medical profession not being able to accurately diagnose what was wrong with me. Other than say I had ME or CFS and Fibromyalgia, which in those days was the go to description or diagnosis for any condition they could not figure out, or if they thought you were faking it or malingering. I had lost four babies, not being able to carry them to full term, my hair all fell out, my kidneys failed, and I was in and out of hospital with pericarditis and meningitis.

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My name is Denneys Niemandt, a 53 year old male from Cape Town in South Africa, and was diagnosed with PULMONARY HYPERTENSION in 2007.

At that stage I was 1 of only 10 known cases of Pulmonary Hypertension cases in South Africa. My frustration is not the fact that I have this dreaded disease, but because comparing to the UK and other overseas countries, there is so little known about the disease in South Africa.

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Hi, my name is Kim Foulston and I am 44 years old. I have not been a stranger over the years to pain, regular doctor and specialists visits, heaps of medication, blood tests, hospitalisation, drips, biopsies, swollen ankles from water retention, absenteeism from school and later the workplace, and disappointment when unable, at the last minute, to attend functions.

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My name is Nadia Collins. I am 36 years old.

I was diagnosed with Idiopathic Pulmonary Arterial Hypertension on 1 October 2018 by dr.Bennett at Wilgers hospital, via right heart catherization.

I have 3 children, and started noticing PH symptoms 3 years after my last baby was born. During that time i thought the symptoms was from my thyroid medication, but as time went by i started wondering if something else could be the matter, so i went to see dr Burger in Polokwane and he then advised me to see a cardiologist as he noticed an enlarged heart.

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It was in the year 2014 that I realised something was terribly wrong with me. All my life I had been able to walk for miles over any terrain without any trouble. At the time I was a very heavy smoker and yet I was still able to do anything physical without any difficulty. Suddenly the smallest amount of exercise exhausted me. I ignored the symptoms thinking that as I had not been as active for a while, I was just unfit. However, it continued to become more and more difficult to function. Walking the few steps from the car to my house left me breathless.

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