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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Shanna Hiemstra - phaware® interview 317

Mar 20, 2020

South African Pulmonary hypertension caregiver, Shanna Hiemstra is captain of Team PH South Africa. Since Shanna's mother Sandra was diagnosed, Shanna has become largely involved with PHA South Africa.

My name is Shanna Hiemstra. I am part of the committee of the Pulmonary Hypertension Association of South Africa. I'm based in Johannesburg, South Africa and I am the daughter of a PH patient [Sanda Small].

Pulmonary hypertension is something that is really important to me. We're not represented well enough in South Africa. Obviously, being a rare disease, it means that there aren't a lot of people who know about the condition. There are not that many medical practitioners who treat it and a lot of patients go undiagnosed. Thank you very much for this opportunity to chat about it, because I think that in our part of the world, it’s great when we have the opportunity to be able to reach out to more people out there.

We were actually on a family hike, which we do every year around Easter time, and my mum does it with us every year. We go on really long, like four or five day hikes together. And she suddenly collapsed. I wasn't there at the time. She was with some of my family members and it was really strange. They rushed her off to the doctor. She was really fortunate that the physician that saw her was actually aware of pulmonary hypertension, and he wanted to run a few tests and she was really fortunate that she was diagnosed fairly quickly. That was in the year 2000.

So we are coming up to the 20 year anniversary of my mom's diagnosis. She's actually the longest surviving PH patient in South Africa. It's quite incredible. She takes every year as it comes. She's hit goals for herself. At the time, I was in my final year of high school and they told her that she would have a maximum of three years to survive, because as we know the diagnosis for a PH patient is roughly three years according to the studies.

She wanted to see me graduate high school and then her next goal was for me to be able to graduate university. She has, over the years had many, many milestones that she's been able to witness, which has been fantastic. Little did we know that around a similar time, not long after she was diagnosed, there was a lady [Sharon Chetty], who was diagnosed in another part of our country in about 2001. She actually wrote a newspaper article and had it published saying she has pulmonary hypertension, she doesn't know anyone else who has it, but is there anyone else out there in the country who maybe has pulmonary hypertension that she could reach out to and maybe they can form a connection. Amazingly, two people responded to her newspaper article, and a few years later they formed an official support group.

Then as time went by, in about 2006, [another PH patient, Elzarie Devenish] started putting out requests for sponsorship to attend a PHA conference. She was really fortunate that they managed to raise enough funds for her to be able to go and she went to the conference that happened in Minneapolis, in 2006. There she met with an incredible team. They inspired her to start something more substantial in South Africa. A couple of years later as more and more patients started getting together, my mom being one of those. I think they had, at that point, about five patients who had been diagnosed around the country. They all met together in a really small town and they decided to work together to start the Pulmonary Hypertension Association of South Africa. That was in 2010. They were officially registered as a nonprofit organization. They've put a lot of work into putting their association together. We've managed to get medications more accessible to patients at lower costs. We advocate for PH patients around the country and we still have a lot of work ahead of us.

Currently, in South Africa, we only have two treatments registered for Pulmonary Hypertension. Internationally there's between 14 and 16 depending on where in the world you are. So PH patients still have to fight for every access to treatment that they can. Those are some of the big tasks that we have ahead of us. My mum and I were extremely fortunate and very honored that we were able to attend the PHA Conference in Dallas that took place in 2016. It was so inspiring. It was absolutely incredible. The number of patients, the support, the healthcare practitioners that focused on pulmonary hypertension, it was really inspiring.

I was lucky enough at that conference to meet up with Team PHenomenal Hope. I'd never heard of such a thing before. I was really inspired by the incredible work that they do to advocate for pulmonary hypertension patients and it was really such an interesting way of people who have the ability, like myself, to be able to support patients who don't have the ability to participate in sporting events. I made contact with the team then and there have been incredibly supportive of us.

We officially started Team PHenomenal Hope South Africa based on that meeting. They helped us to set up a website to design our kit and we've participated in a number of big events with some teams, especially cyclists, and as we're starting to grow, we're starting to participate in more and more events and we're gaining some traction now. We've got some big tasks ahead of us. We're participating in some big events later in this year. I plan, coming from a zero base plan, to participate in an ultra-marathon. [It’s] what's called the Comrades Marathon. It's 90 kilometers. I don't know what that conversion is in miles, but it's really, really far and I'm petrified. Especially, because this is a milestone year for us with 10 years of Pulmonary Hypertension Association, and 20 years since my mum was first diagnosed. I felt like this was a year to really take a massive step and make a huge commitment to be creating more awareness for pulmonary hypertension. Hopefully we'll get more following based on that.

We've worked really closely with another group called the Jenna Lowe Trust. Jenna was a pulmonary hypertension patient who really advocated for patients in South Africa. Unfortunately, she passed away just short of her 21st birthday, and her parents have been incredible in keeping up her legacy and still driving awareness for pulmonary hypertension patients. As a result of that, through their connections and their network, they've really kept in good contact with some great specialists in the U.S. We're working with them and [they’ve] put together the first ever Pulmonary Hypertension Patient's Perspective Conference, which is taking place in March this year, which is really going to be incredible. It's the first time that we've had anything of this sort in South Africa and there are doctors coming over from the U.S. who will be meeting with our local patients and giving them advice. It's really going to be the first time that we bring so many patients together, much in the same way as what [PHA] has done in the U.S. We're hoping that this will help to create more of a community and help us to be able to advocate better, especially for our patients that are receiving treatment in the government sector who really have very little access to treatments as it stands today.

It's incredible how far we've come. In 2000, when my mum was one of three patients that we knew of and it started to grow and grow, we now know of roughly around 100 patients in South Africa all around the country. We have doctors that are specializing in PH, which we never thought would ever happen. We have a really strong community. We are working together closely with Rare Diseases Association of South Africa, as well. It's amazing how when people have a united front and they're joined together for a common purpose.

The family connection that we've created, we have people all around the country who have never met face to face, but they're on WhatsApp groups together and they support each other through hospitalizations, through surgeries, through new treatments through clinical studies. It's really amazing how just by connecting together, so much is possible and so much more is going to happen.

We've got patients that are being represented who have never ever been represented before. We have managed to achieve so many things and it's amazing how even people who are not personally connected to pulmonary hypertension are willing to show their support and willing to create awareness through Team PHenomenal Hope.

People who know of someone via someone, via someone who've bumped into someone who's dragging around an oxygen machine are wanting to support Team PHenomenal Hope. We've got specialists, we've got physiotherapists who are part of the team and it's really amazing to see what pulling together can really do to make a difference for pulmonary hypertension patients. I think there's just so much more to come so that these patients have a voice.

I'm Shanna Hiemstra, and I'm aware that my mom is rare.

Learn more about pulmonary hypertension trials at Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: #phaware. Click to learn more about Team PH South Africa.