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

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Paula Menezes - phaware® interview 318

Mar 24, 2020

Paula Menezes was a caregiver of her mother, Maria Cristina, who was diagnosed with Pulmonary Hypertension in Jan 2005. Maria passed away in 2007. Before her death, ABRAF (Brazilian Pulmonary Hypertension and Related Diseases Association), was founded by Paula’s father. Paula is the president of the organization as well as the captain of Team PHenomenal Hope Brazil.

I'm Paula Menezes, I am a lawyer. I am personally affected by pulmonary hypertension as a caregiver of my mom. She died in 2007, less than three years after her diagnosis. Before her death, my father and I founded an organization here in Brazil that helps the PH community.

Since then, I've been working in ABRAF, that is our organization. Since 2018, I'm fully dedicated to ABRAF. My mother was misdiagnosed during some years. There was a point that she had cyanosis on her arms, and her doctors said that was because of the sun that we have here in Brazil. So we used a blackout [curtains] in our house and in our offices because we thought that would get her better.

She was also diagnosed with asthma and obesity. We bought a treadmill for her, and that just made more damage to her heart until the day she went to the hospital, because she wasn't feeling well. We were lucky because the doctor that was there, the pulmonologist that was there, was studying PH as her master. She said, "Oh, I think you have the disease that I'm studying."

She stayed in the hospital for 15 days. They realized that she had PH, but only after six months. They understood the reason about it, which was scleroderma. We know that is a very fatal kind of PH. Unfortunately, she passed away two years after that. She passed away in 2007, so [it will be] 13 years in 2020.

When we found a doctor that was working on this field, it was a relief at the first moment, but once we started searching in the internet, what was PH, then we got really scared, because even today we are scared about what is reading about PH. But back in 2005, it was even worse.

We didn't have an organization. We didn't have anyone to talk with. We didn't know any other patients, so we just heard bad news that she was going to live only two years and eight months. By coincidence, that's the amount of time she lived. But we didn't know of any drug. We didn't know treatments. We were really blind. We were really trusting in the doctors, whatever they said we should do, we did. But it wasn't enough.

After she passed away, when I went to U.S. for a conference, I finally realized that there was a world of medications that we didn't have access for her, and that made me feel really bad. If I knew that, if I had the information, maybe I could have done more. So that's why I decided to continue our work to provide information for the people, to provide another opportunities that we didn't have.

First of all, when I went to U.S., I was really lost, and it was going to be my first birthday without her. So that's why I decided to go to a PH conference, to get away from here. I saw 2000 people in a conference, and here in Brazil we were just two patients, my mom and the friend that we found for her. If you compare the size of United States and Brazil, it's quite the same. Then I realized, "Well, maybe we have this huge community in Brazil, and maybe we have a lot of people lost around Brazil. So, we can do a good work."

Then I realized what a patient organization could do for the community. Also, it just clicked after she passed away. One week after she passed away, I was at the beach, because I stayed at the beach for a long time. I thought, "Well, what did I like about her most, or what people admired her most?"

It was her energy. Her positive behavior. I thought, "Well, I have to try to be like her, because if I try, then I feel connected to her, then I would feel that I'm making her proud." So as I admire my mom, and that was her best accomplishment. I tried to be positive, besides all the pain that I was suffering. I just got involved and more involved until I was 100% involvement in it.

We started here in Brazil with a website. After I came from U.S.. Then we apply for a grant, and received the grant. So, we did our first meeting, and then we started going to the hospitals, to the reference centers to meet the patients, to present ourselves.

Then we started hiring volunteers, because Brazil is very big. I learned that we could make support groups, and now we have 12 support groups around Brazil. So we started connecting with doctors. It was a very careless community, you know. So we started step-by-step, and then we were growing because we got the role of being the support of all of these patients.

After that, we started going to Brasilia. That is a capitol and where the deputies are, the parliament. I started to connect to senators, and then we started to get more involved with public policies. It was step-by-step. We've been in this for over 18 years, so it's not from one day to another.

Team PHenomenal Hope is a project of ABRAF. So it's one of our projects. I'm met Team PHenomenal Hope in 2014, when they were crossing America by bike. I was in Indianapolis, and I got really impressed with it and I really wanted to do something like this in Brazil. But it was the year I was going to get merits, and I thought I cannot do anything more than this. I just kept it in my mind. In 2015, I met Dr. Patricia George and asked her to support us on creating a team in Brazil, and she encouraged me to create Team PHenomenal Hope Brazil. That was their first international PH team.

We decided to launch the team. But instead of collecting funds, because here we make research, but as an organization we weren't too involved with it. It was a great opportunity for us to draw attention to our cause, because the government had just published a national protocol for PH that was a nightmare for the patients. You can imagine, and they just prohibited combined therapy.

We wanted them to review this protocol. We decided that instead of collecting funds, we were collecting signatures to pressure the government. So during the first year, since November 2015 until October 2016, we raced across the country asking people to support us with an online signature to press the health minister to review the PH treatment guideline.

In October 2016, we have Team PHenomenal Hope America. We raced an ultra-marathon, and we were challenging ourselves to become an ultra-marathon in 11 months. We raced that ultra-marathon that was 75K. It was amazing. The patients were there, the media were there, and we drew a lot of attention to our cause.

After that, we had some meetings with the health ministry. We started working with senators. Now, four years after, they started reviewing the guideline, and they are started inviting us to [the] debate.

It's a long time for pressure. It's not just collect signatures and it's okay. Besides the signatures, we had a whole advocacy strategy to make it happen. Since 2016, after we collected the signatures, we realized that Team PHenomenal Hope Brazil couldn't die. It wasn’t just a one-year project.

So we started improving Team PHenomenal Hope Brazil here. After that, we started with the athletes carrying a bib on their chest with the picture of a patient. Then before the race, to promote the life story of this patient during the race, we managed to highlight there was a patient running, putting her or his name and picture as evidence. After the race, we give the finisher medal to the patient. So, he or she received something that until that point was unimaginable, like a sports medal to a PH patient.

Then in 2018, we thought that we could go beyond that. Feeling that patients were real excited about having their face on the bib and getting the medals of the race, we realized that we could carry the patients in the wheelchairs. That was to bring attention to a cause in a health environment.

So, since 2018, every two or three months we have what we call official race where we race some sports, even that it's running on the city around Brazil. We invite the patients and carry them with wheelchairs. That way we can bring attention. Also, we can promote to the patients an excitement experience that maybe they weren't feeling for some time. That breeze on their faces, feeling like they are a champion, receiving the medal, being in the highlights.

This year we just hope to have our team growing more. We're now 15 athletes, so I hope we can bring more athletes. Also we are going to connect every athlete to a patient, [which is] special. So we want to make this connection, make the patients even closer to the athletes.

I just think that if I had this support in the past, things would be different. That makes me feel real happy. Even though I didn't have it, I feel that people now, patients and caregivers are being treated in a different way. They feel they're supported. It's just the opposite how I felt.

I have to make them have another experience. A better experience. Despite everything that is bad, that PH brings itself. So, everything that ABRAF can make to promote a relief, or to integrate, or to give information, or to make them feel supported and not alone, we are going to make it.

My name is Paula Menezes, and I'm aware that my mom was rare.

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