Mesothelioma Awareness Day is September 26. Leading up to that day, the Mesothelioma Cancer Alliance is reaching out to patients, survivors, advocates, doctors, researchers, and others who are involved in awareness efforts around mesothelioma to get their thoughts on important topics related to this rare form of cancer.

For the first part in our series, we asked individuals the following question:

If there’s one thing you wanted people to know about mesothelioma, what would it be?

Heather Von St. James

10-year Mesothelioma Survivor

Heather Von St. James

Mesothelioma is not lung cancer...yes, it affects the lung, but it’s cancer of the mesothelium, the lining of the organs, and it affects not only the lungs, but the abdomen and heart as well.

Mesothelioma is not a "worker’s disease." Many people who have mesothelioma never worked with it. They, like me, were exposed to asbestos second-hand. You don't have to have occupational exposure to get sick.

Also, mesothelioma is not a disease that affects men in their 70's only... there are patients of all ages.. the youngest I know of is 16, plus women are the fastest growing mesothelioma patient population.

Mesothelioma survival rates have not changed significantly in over 30 years... Yes, treatments have gotten better, and more aggressive, but funding for research is almost nonexistent since it is considered an “orphan disease.”

Mesothelioma is almost always caused by asbestos exposure, and contrary to popular belief, asbestos is not banned in the USA. We are one of the only industrialized nations to not ban the toxic substance.

Mesothelioma is about more than the commercials you see on TV. It is about the innocent people who got sick because of corporate greed and cover ups. So many innocent lives lost and turned upside down because it is completely preventable. No asbestos, no mesothelioma.

Cheyanne Holzworth Bany

Blogger, Mesothelioma Advocate, and Daughter of Mesothelioma Victim William Holzworth

Cheyanne Holzworth Bany

Mesothelioma is more than just a legal advertisement you used to see on TV – it's a real, terminal illness with no cure and it causes roughly 2,500 deaths each year in the United States.

Rachel Thomas

Granddaughter of Mesothelioma Survivor Bob Thomas

Rachel Thomas

I would want people to know about mesothelioma is that it is more than a word on a lawsuit commercial. I spent 26 years overlooking mesothelioma and turning the channel on those commercials, because “I would never be affected.” Isn’t that what we all think? It’ll never happen to us, or our loved ones. We’re wrong.

I did a lot of research after my Grandfather’s diagnosis, and was baffled to learn that asbestos is still legal in the United States. I pray that people educate themselves on Mesothelioma, asbestos and asbestos exposure. You don’t have to be directly exposed to asbestos for asbestos to affect you: Your loved one could have brought it home on his/her clothing, the effects of exposure can lay dormant in your body for up to 50 years!

We need to bring mesothelioma awareness, and research, to the forefront, and hopefully instill some hope in those suffering, those who face a diagnosis in the future and all families affected by this disease. I pray that one day, no one will have to go through what my family is going through now.

Linda Reinstein

President & CEO of the Asbestos Disease Awareness Organization

Linda Reinstein

For me, the three most important things patients and families need to know are:

You aren’t alone. There is a vibrant and supportive community, online and in person, to alleviate isolation. You’d be surprised, too, at how much you gain from giving your support to others. As Maya Angelou said, “Try to be a rainbow in someone’s cloud.”

Accept your new normal. Hard as we try, there are undeniable and permanent changes in both the patient and their family’s’ lives.

Live your life, not your cancer. Our lives become intertwined with treatments and post-treatment side effects, but you can combat that by finding your joy and letting friends and family in – they want to give, help, share, and listen.