What Mesothelioma Awareness Day means to a survivor
The average life expectancy for a mesothelioma patient after diagnosis is 12-21 months. For Heather Von St. James, that wasn’t an option. She was diagnosed at 36 years old, only 3 months after giving birth to her only child, Lily. We’ve covered Heather’s story in increments before, so read up on her story here.
What is Mesothelioma Awareness Day?
Approaching at the end of this month is one of the most important days for a mesothelioma patient or survivor. Mesothelioma Awareness Day (MAD) falls on the 26th of September, and this year marks the 15th anniversary. The day was established by the Mesothelioma Applied Research Foundation (Meso Foundation) in 2004 in order to bring more attention and funding to this cancer.
If you’re not aware, mesothelioma is a rare but incredibly dangerous and fickle form of cancer. Once the body is tainted with asbestos fibers, which cause the cancer, it can take anywhere from 10 to 50 years before mesothelioma is diagnosed. This means that upon diagnosis, it’s often in mid- to late-stages and gives patients a very short life expectancy.
There are two main ways to combat mesothelioma.
- Educating people on the dangers of asbestos, preventing exposure to the mineral, and working for a comprehensive ban on it.
- Improved cancer research and trials to detect this cancer earlier and treat it better.
MAD seeks to rally the community around both of these goals. Since about 3,000 new mesothelioma cases are diagnosed in the U.S. each year, it’s a relatively rare cancer that doesn’t get the amount of attention, funding or research other forms of cancer might.
For Heather, recognition is the most important part of MAD.
“A lot of people call it an ‘old man’s disease’, but I was 36!” she said. “So it’s really nice to finally have a spotlight shining on this disease.” Fighting the myths, misnomers, and misconceptions around mesothelioma and asbestos is important to Heather because they take away from the efforts to actually fight and cure the disease.
Common asbestos and mesothelioma myths
- Mesothelioma is an ‘old man’s disease’.When asbestos was still used liberally in manufacturing, occupational exposure was the most common way to come into contact with the mineral, so the highest-profile cases were often men diagnosed in their 60s and 70s. Now, asbestos exposure is likely on and off the job, where anyone of any age or gender could be at risk.
- Asbestos is banned. The Asbestos Ban and Phase Out Rule was passed in 1989 and quickly overturned in 1991. Despite popular misconception, asbestos is actually still allowed in U.S. products today and has not been completely banned. It’s allowed in amounts of up to 1% when manufacturing certain products.
- I won’t come into contact with asbestos. One percent might not seem like enough to cause harm, but new products aren’t the only place to find asbestos. Many old homes, buildings, cars, boats, fire-proof items and other products were made with the mineral and are still used today. We come into contact with these things daily which greatly increases our likelihood of exposure.
How to support MAD
Misinformation about the prevalence of asbestos exposure today is one of the biggest reasons MAD is so important. Part of the efforts of this day includes spreading awareness in a tangible way to different communities.
Obtaining a proclamation for your hometown or state will make Mesothelioma Awareness Day an officially recognized day in your local community. This kind of widespread awareness on a local level can push the needle back on misinformation and result in better education and ultimately, funding for research. To obtain a proclamation, visit CureMeso.org and follow the steps to download a sample text and find your local representatives.
“It’s an important day for me because it’s touched my life in so many ways,” Heather said. “And I think sharing my personal story with other people can be really powerful.”
On September 26th, be sure to take to the internet with #EndMeso and support stories of survivors and treatments. Wear blue, the color for mesothelioma support, and share your own tale of involvement and what Mesothelioma Awareness Day means to you.