The MCA BlogConnecting with others one story at a time
I always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.
When I was diagnosed with mesothelioma, I was a new mom and relatively healthy. Then my world came crashing down. Speaking and sharing my story has been instrumental for me in healing emotionally and physically from the scars that remain from surgery and treatment. It also awoke in me a fierce desire to do it more. I wanted more people to know about the dangers of asbestos exposure. If I could get mesothelioma, anyone could.
When Linda called me last summer to tell me the news that I would be a recipient of the Alan Reinstein Award and ask if I would be a keynote speaker for the brunch at the 10th annual ADAO conference, honored doesn’t begin to describe how I felt. It was wonderful to see that someone was noticing all the work we had been doing to build awareness around this disease. I couldn’t say no! She asked me to speak about the power in our voice; how fitting, I thought, since she gave me mine.
This journey has been a long time in the making. When I started blogging for the Mesothelioma Cancer Alliance it opened up the floodgates, so to speak. With the help of our blog, we are able to reach out to individuals and communities through the web and social media, and we’ve created our own community around mesothelioma awareness.
Our community has taught me so much about the power of a voice. The amazing people I’ve met through this just leave me speechless sometimes--survivors and family members who are willing to share our story and bring awareness to a disease that most people only know about through commercials on TV. People are able to hear the voice of a real family affected by dangers of asbestos.
This is what Linda and the ADAO is all about, having our voice heard. This year’s ADAO conference had so many voices: there were 10 countries represented and 30 speakers from all walks of life. Present were patients, doctors, and industry experts who know firsthand the current state of asbestos use and dangers. The highlight was hearing the acting US Surgeon General, Rear Admiral Boris Lushniak speak on Saturday. He knows from experience what a menace asbestos is to public health and, with his help, we will get the word out that no level of asbestos exposure is safe.
The conference also had patients share their stories of triumph and tragedy. A young woman from Turkey named Sinem, who is a graduate of Dokuz Eylul University, has witnessed the horrible working conditions and asbestos exposure risks that happen in shipbreaking yards in her country. She is advocating for a global asbestos ban.
What the conference did for all in attendance was give us a call to action. We can no longer just sit and hope Washington will do something, we need to reach out and make our voices heard. Asbestos Awareness Week always coincides with the annual ADAO conference, and it does so for a reason. This year’s theme, Where Knowledge and Action Unite, was a call to all of us to do our part. Yes, I am a survivor, but can be so much more. The acting surgeon general even challenged me to get more involved and do more, and I intend on doing just that.
Becoming involved can be something as simple as calling your representative or Senator and telling them why they should not support harmful legislation, such as the FACT Act. Tell them your story, or the story of someone you know. Educate yourself about the dangers of asbestos, because education and awareness is the beginning, and right now the only cure is prevention.
Resources for Mesothelioma Patients and Their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center