Pulmonary Fibrosis, Ethnicity, and the Need for Organ Donation

This year marks the 25th anniversary of National Multiethnic Donor Awareness Month, created to educate multiethnic communities about organ, eye, and tissue donation and transplantation, and encourage donor registration and family conversations about donation. People from communities of color make up nearly 60% of people who are waiting for lifesaving organs in the U.S., but only a third are registered donors.

This National Multiethnic Donor Awareness Month, I’m here to share my pulmonary fibrosis (PF) story to spread the word about the need for lifesaving organs and empower multiethnic communities to register for organ and tissue donation. And, as a Pulmonary Fibrosis Foundation (PFF) Support Group Leader, it’s critical that I educate others about PF, including symptoms and treatment options such as lung transplantation.

My pulmonary fibrosis journey

In 2015, I was diagnosed with PF, a debilitating, incurable lung disease that causes scarring in the lungs. However, my journey with the debilitating illness did not begin there. It runs in my family and has claimed the lives of my mom and three of my uncles. In 2010, my mom was diagnosed with PF after concern about a cough she had been experiencing for months. I became my mother’s caregiver and started to educate myself about PF, including symptoms, risk factors, and treatment options.

In addition to a dry, chronic cough, the most common symptoms include shortness of breath and fatigue. I knew that I had the symptoms based on my mother’s disease journey. I also discovered that risk factors include those with a family history of interstitial lung disease (ILD). That’s when I decided to make an appointment to get some tests, and I was told that I would receive a phone call if anything came up. When the phone rang a week later, I knew what they were going to tell me.

After my own diagnosis, I started to do a little bit more digging and found the PFF. I realized that I wasn’t alone in my fight. I have learned a lot through the PFF’s resources and webinars and have met many people going through similar experiences. The advice I would give to other patients and caregivers is to try to learn as much disease information as possible. Being diagnosed is accepting the diagnosis and once you accept it, you learn how to deal with it.

After my mother lost her battle with PF while waiting for a lung transplant – and following my own diagnosis – I made it my goal to advocate for other PF patients from communities of color and to drive more awareness around the disease.

You can learn more about my story by watching this video.

PF and ethnicity

When comparing ethnic and racial differences in idiopathic pulmonary fibrosis (IPF) in the U.S., research has shown a significantly greater proportion of IPF among Hispanic and “Other” (example, Native American and Asian) ethnicities compared to white people, even after accounting for age and sex. On average, Hispanic people with IPF also died 2.5 years sooner than white people. Supporting these findings, other research suggests that Hispanics and Asians fare worse with ILD in general. More research needs to be done to understand the impact of PF in different ethnic and racial groups.

Lung transplant is a lifesaving treatment

PF awareness remains very low and early diagnosis is challenging. PF diagnosis often comes in its later, harder-to-treat stages. While the road to diagnosis can be long, there are treatment options that offer hope for patients.

Lung transplant is a lifesaving treatment for people with late-stage lung disease after other treatments have been exhausted. Studies demonstrate that lung transplantation is associated with a significant improvement in quality of life. Before lung transplantation, supportive care treatments, such as supplemental oxygen and pulmonary rehabilitation, can mitigate symptoms, while antifibrotic medications can slow down disease progression by about 50%.

Educating yourself about any disease is powerful, and there are a lot of resources out there to take advantage of, such as the PFF. The PFF helped me when I needed it most, and I have taken advantage of its resources, including ongoing webinars on important topics such as symptom management, and patient education materials, like Preparing for a Lung Transplant and Life After Lung Transplant, which have given me hope. I also encourage patients to visit the PFF’s YouTube page to tune into educational videos regarding lung transplants.

Awareness starts with you

I’m lucky to have discovered the PFF and serve as one of more than 150 PF Support Group Leaders in the U.S. Today, I lead a successful PF support group at Chicago’s Loyola University Medical Center. I started the support group to keep my mother Tomasa Vazquez’s legacy as a fighter of PF alive. It is my honor to educate those around me and promote PFF’s resources and disease awareness to the greater public.

This National Multiethnic Donor Awareness Month consider signing up to be an organ and tissue donor. Your donation could be lifesaving and makes our advocacy and research possible.

And in September, as we observe Pulmonary Fibrosis Awareness Month, I encourage you to participate and join with those who have been impacted by PF. Also in September, take one step forward in the search for a cure by registering for the PFF Walk on September 25th.

For more info about PF, visit www.AboutPF.org or www.AboutPF.org/espanol. For additional information and a complete list of support groups across the country, click here.

My future is very positive, and none of us are alone. We are all one big community, fighting for one cause and a cure for PF.