Diverse Voices in Donation Education

August is National Minority Donor Awareness Month, a time to bring awareness to donation and transplantation in multicultural communities. The goal is to create a positive culture of organ, eye, and tissue donation. 60% of people waiting for lifesaving transplants are from multicultural communities. The need is much higher in minority communities where higher rates of diabetes, high blood pressure, and heart disease contribute to organ failure.

We asked Darryl and Tina, two of our dedicated “Champions for Life” volunteers, to share their transplant stories. Read below to learn why they’re so passionate about educating their own communities about the importance of donation.

Darryl's Journey 

During a routine checkup, Darryl learned he had Hepatitis C. He didn’t feel sick and had no symptoms. The doctor told him the virus can be inactive for years but still cause damage to the liver. It can also lead to liver cancer, which is what happened to Darryl. Doctors were able to kill the cancer, but his liver was too damaged. A transplant was his only option.

During the process of getting listed for a transplant, Darryl got very sick. He was admitted to the hospital to wait for his new liver. His second chance came, but his journey wasn’t over. During the liver transplant surgery, Darryl’s kidneys shut down. He had to spend 19 very hard months on dialysis, before receiving a kidney transplant and another chance at life. Now, Darryl is a passionate advocate for donation.

What did you know about donation and transplant before you were sick?
Nothing! I was in my 50s, a 10-year U.S. Navy veteran who had traveled all over the world. I had worked for major cruise lines and met thousands of people from all walks of life. But I didn’t know anything about transplants. I was embarrassed, but as I thought about it, I realized the information was never given to me. I didn’t learn about it in school, church, or even in the military when we were learning a new way of life.  When I was asked at the DMV if I wanted to be a donor, there was no education that came along with that question. I probably said “no” and never thought about it again.

What hesitations or fears did you have when you learned you needed a transplant?
Despite my lack of knowledge, I didn’t have any fears or hesitations about getting a transplant. Over the years, the doctors treating me for Hepatitis C worked hard to keep me healthy. I had tremendous trust in them, and I was confident they would continue to take good care of me throughout the transplant process.

What do you think is the most common barrier to donation in your community?
Without question, it’s lack of awareness and education. I believe a constant flow of positive information would help dispel the myths and misinformation in the African American community. Those myths carry some weight because of some of the horrible things that happened in the past. We need to drown those negative views out with positive images and stories. People who received transplants should stand up and talk about their experience and how donation affected their lives for the better.

What do you want people in your community to know about organ, eye, and tissue donation?
I want people to know that donation and transplant saves and enhances lives! I am very quick to tell someone that I am a double organ transplant recipient. I don’t do this to brag, but to show that transplant works, it saves lives and allows us to be productive members of society once again. I also encourage everyone to educate themselves about the donation process through a reliable organization like LifeShare Carolinas or Donate Life America.

Tina's Journey

When Tina was getting her pre-college physical, she learned she had Lupus. It started in her kidneys and later spread to her joints. She was hospitalized twice during her freshman year of college. She continued to work hard and graduate while battling the disease. Several years later, the Lupus moved back to her kidneys, and she had to quit her job and find a new career working from home.

Tina’s kidney function continued to get worse. A few years later, she was listed for a kidney transplant. With some positive lifestyle changes, she was able to get off the list for a few years. Eventually, that wasn’t enough. She was back on the list, and this time she wasn’t coming off until she got a transplant. She received her transplant in 2012. Since then, Tina’s been living a happy and healthy life, grateful every day for her second chance.

What hesitations or fears did you have when you learned you needed a transplant?
It was scary and I was very shocked! I had a lot of fear because I didn’t know anything about donation and transplant myself, and I didn’t know anyone who had or needed a transplant that I could turn to for support.

What do you think is the most common barrier to donation in your community?
In the Native American community, there’s definitely a lack of knowledge. And that leads to fear and misconceptions. Most people in my community think if you’re an organ donor, they won’t get help if they are sick or injured.

What would you say to those in your community who are hesitant about signing up to donate?
Look for the facts, not the myths. Educate yourself by speaking with individuals who have received an organ transplant and talk with families whose loved ones donated. It's not an easy conversation, but a much needed one.  

What do you want people in your community to know about organ, eye, and tissue donation?
I want my community to know they are giving someone a second chance or new lease on life. That it is so rewarding. Ask around, because there are a few of us who are transplant recipients and we’re happy to share our experience.