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

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Inspired by HOPE Transcript

Apr 28, 2017

 

Marina Lazić and Jovica Spajić are two Serbian Ultra Marathon runners. Their Inspired by Hope team was established by the Association of Serbian PH patients, knowing that finding a cure starts with raising public awareness about the disease. From 4.30.17 through 5.6.17 they will participate in the Sahara Race 2017 in Nambia, running a distance of 250km over a 7 days, including #WorldPHDay.

Marina:
My name is Marina Nikolić - now Lazić because I got married. I'm from Belgrade, Serbia.

Jovica:
And my name is Jovica Spajić. I am from Serbia, from Belgrade. It's a capital of Serbia.

Marina:
Inspired By Hope is a new project for raising awareness of pulmonary hypertension. A few months ago my friend Jovica and I met a woman who is suffering from this disease. Her name is Danijela Pešić [phaware podcast Ep #3]. Danijela has established the association of Pulmonary Hypertension in Serbia.

Jovica:
In Serbia it's a very complicated situation.

Marina:
Unfortunately, in Serbia there is only one treatment for this disease and raising awareness of pulmonary hypertension is the only way to making the problems of these patients visible.

Jovica:
Our mission is to try to find solutions that the patient, they must know that they are not alone, you know. We are with them.

Marina:
We decided together to prepare our new project for raising awareness of pulmonary hypertension and we created a team of two ultramarathon runners.

Jovica:
I'm a member of a special anti-terrorist unit in Serbia. It's special elite police force in Serbia. Endurance sports is something which is like equivalent for a special force, you know? And my first race was in Sahara desert several years ago, and sport is almost everything in my life.

Marina:
Jovica gave me a lot of advice about running but most importantly he gave me a chance to run this important race, because this is a race for patients with pulmonary hypertension. And he chose me to be part of this team. We will train together, work hard.

Jovica:
Marina and I have run several races together. Together we have several projects in our history, and she's also a very emotional person. Her vision of ultra running is different. It's more deeper, more emotional, you know.

Marina:
Sahara Race is one big race, which will be held in Namibia, in South Africa in the Skeleton Coast National Park. It will be held from the 30th of April to 5th of May. We need to run 250 kilometers. The Sahara Race, of course, includes four stages of approximately 40 kilometers, then one stage of 80 kilometers, and the final stage, which is less that 20 kilometers, maybe 10 kilometers. And that long stage of 80 kilometers will be physically the most difficult part of the race for us, but it will be the most important part of race because we will finish the long stage on the 5th of May and that day is World Pulmonary Hypertension Day. We will run for the honor of all patients who suffer from pulmonary hypertension and we want to inspire them to keep going and keep fighting and we want to be their heart and their hope.

Jovica:
When you do that challenging race, it's very, very, tough. You give your all that you have got. You gather the last atom of your strength, and that is a similar like everyday life in a patient's life. They have their own battles, like Danijela. Her breath is some kind of little battle. Like endurance sport, every kilometer sees something new, something very tough, and that is like a similarity, you know?

Marina:
And the hardest part is pain, because endurance runner is in pain most parts of the race. We have a crisis and we're losing strength and energy, especially at high altitude in the mountain races, we are breathless and gather strength for another step forward. And all that pain disappears when we cross the finish line. But patients have to live with that pain and lack of oxygen every day in their entire lives, and that's why endurance racing is similar to life as a pulmonary hypertension patient.

Jovica:
We are very, very inspired by these people, you know, and we are very happy because we have an opportunity to bring their story to the whole world, you know? To the whole community, to the ultra running community, to a Serbian community, you know, to whole world community.

Marina:
I remember one girl, her name is Angela, and she's 19 years old, I think, a girl who is suffering from this disease. And I remember that she had a smile on her face, and I think that she is battling with this disease with that smile, and that smile will be my strength and power on this race.

Jovica:
People can watch us every day, after every stage there are going to be results, and we are going to try to find a solution and to type some messages, and to tell people and our supporters that everything is fine, that we are in good spirits, that we try to bring our story in the best possible way.

Marina:
I think that whoever wants to follow our race and support our goal can visit the official site. It's www.4deserts.com. My name is Marina Nikolić and I'm aware that I'm rare.

Jovica:
And my name is Jovica Spajić and I'm aware that I'm rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware