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

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Maricela Arevalo Transcript

Jul 4, 2017

Team PHenomenal Hope Mexico was created to assist patients with pulmonary hypertension in Mexico. All funds raised through Team PHenomenal Hope Mexico are donated to the ARTERIA Foundation, a nonprofit whose goal is the construction and maintenance of the first Pulmonary Rehabilitation Center in the country.

Hi, I'm Maricela from Mexico. I'm from Monterey, and I am a member of Team PHenomenal Hope Mexico. I met Eric Pricefield and Patricia George and Paula from Team PHenomenal Hope Brazil. She gave her story about how the team was in Brazil. So I was so emboldened and wanted to do it in our country.

I'm not an athlete. I was a dancer, a ballet dancer, and now I am an athlete. I was running five kilometers and then ten and then fifteen. And now I'm going to do the Iron Man with all my cousins. So that's where Team PHenomenal Hope was born.       

We are here because of Sofia Arévalo, my sister, has lupus and pulmonary hypertension since 2013. So, Sophia founded a nonprofit organization in Mexico named ARTERIA Fundación to help people like her. It was created to help patients with pulmonary hypertension in Mexico who have no access to drugs or medical treatment.

One of the main limitations for patients with PH is exercise. And for this reason, and for my sister, we are here to help people like her and to raise the voice for PH in Mexico. Mexico is not giving patients upper leg treatment with drugs. People don't have money to get in private hospitals. 

We didn't know anything about PH. And then, when she was diagnosed, we know about it. And my sister was diagnosed in a private hospital, just in two weeks. Patients who are not allowed to [go to] private hospitals have to go to public hospitals. They have to wait to visit three or more doctors to have the diagnose of pulmonary hypertension.

It all this starts in education. If government don't give money to medical education, doctors are not going to know. So we are going to start project with ARTERIA, the nonprofit organization Sophia opened here, and help people and raise money and awareness because we are going to build the first pulmonary rehab center in Mexico. And it's a huge project but we know we can do it. We know that pulmonary rehab is the cheapest treatment for treating pulmonary hypertension.

Our goal in Team PH Mexico is different to in other countries. In the USA, they are raise money for finding the cure. In Brazil, to make awareness and Germany too. But here in Mexico, we are raising money for PH patients and for the rehab center.

In the USA, they have a slogan, “Let me be your lungs.” Whereas here in Mexico, the slogan, "A todo pulmon y con el corazon por pacientes con hypertension pulmonar." The translation is, "With all my lungs and with all my heart to pulmonary hypertension patients." So, we are doing this campaign together, giving our lungs and all of our effort to raise and make awareness of pulmonary hypertension. Because the greatest difficulty for PH patients is they can't do exercise. So we are doing this campaign for them. 

My hope is with this work we are doing together with PH families, PH patients, ARTERIA, Team PHenomenal Hope, and all of this effort we are putting to raise the voice for pulmonary hypertension. We hope that government sees us. See's how it's important to treat pulmonary hypertension because it's a chronic disease, and if it's not diagnosed on time, people are going to die. That's the reality. So we have to be a voice for pulmonary hypertension. And Team PHenomenal Hope is doing that.

My name is Maricela Arévalo, and I am aware that I am rare.

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