Heather von St. James was diagnosed with Malignant Pleural Mesothelioma shortly after the birth of her daughter, Lily Rose. This is a rare type of cancer that occurs in the thin layer of cells lining the body’s internal organs, known as the mesothelium. It’s often associated with asbestos exposure. At the age of 36, Heather was given a life expectancy of no more than 15 months. Click here to read more about Heather, her family, and Lung Leavin’ Day.
To say a cancer diagnosis changes your life would be a huge understatement. I’m not just inferring the obvious changes to your health, I’m talking on a foundational level. I never realized upon my diagnosis of pleural mesothelioma that years later I would become so involved in environmental issues.
I guess looking back it all makes sense. Mesothelioma is a cancer caused primarily by an environmental toxin: asbestos. I started educating myself on the dangers of asbestos not long after I had finished my treatments and crossed that celebratory 1 year mark. I decided it was time to find out more about this insidious substance that is the cause of so many cancers and deaths across the globe. Imagine my surprise when I learned that asbestos was not banned in the United States and was still being used in various commercial and residential products. I, like many others, thought surely asbestos had been banned. It causes cancer. Companies who produced asbestos-containing products KNEW it caused cancer. How could it possibly NOT be banned?
I learned it’s not as simple as that. The asbestos lobby worked long and hard to overturn the ban that happened in the late 80’s. Since then, its use is regulated, but not banned. It isn’t used as widely in everyday products like it was, but it is still used. I realized there is a lot of work to be done to get it banned once and for all. I have partnered with The Asbestos Disease Awareness Organization (ADAO) and The Environmental Working Group (EWG) to go to Washington to make the lawmakers understand that lives are at risk if a ban does not happen. After many senate and congressional staff briefings and tireless work by my friend and mentor Linda Reinstein of the ADAO, we finally made headway in 2016 when the EPA listed asbestos as one of the top ten chemicals listed for review under the Toxic Substance Control Act. This is the first step on our way to a ban!
Because of my diagnosis, I’ve become a bit of an environmental activist, and the proposed EPA budgetary cuts are just a kick in the gut. There are hundreds of superfund sites across the country whose cleanups could be halted with these budget cuts. Many of these superfund sites are asbestos cleanup situations. The entire town of Libby, Montana is one. The EPA has invested millions in the cleanup of Libby, where a vermiculite mine was located. The vermiculite was contaminated with asbestos and in turn, contaminated the entire town. Hundreds of townsfolk have died from mesothelioma and other asbestos-caused cancers and conditions as a result of the mining. Thankfully the mine shut down years ago, but the contamination remains.
It has been long known that many chemicals, not just asbestos, cause cancer. Every day our bodies are exposed to toxins in our environment. From my perspective, without regulations and watchdogs to keep these things in check, more people will get sick and, worse yet, die. As a victim of a known environmental toxin, I feel like it is my obligation to warn people of the dangers of asbestos. If it can happen to me, a healthy 36-year- old new mom, it can happen to anyone.
Please, sign my petition and keep the EPA working.
| Wife | Courageous Mother | Mesothelioma Survivor | Starbucks addict | Lungleavin Day | Blogger | Mesothelioma Research Funding Advocate | Malignant Pleural Mesothelioma |
Heather was diagnosed with malignant pleural mesothelioma in 2005 at the age of 36. She received her diagnosis just after the birth of her first child, Lily.
In February 2006, she underwent extensive thoracic surgery, known as extrapleural pneumonectomy, with adjuvant intra-operative heated chemotherapy under the care of thoracic surgeon Dr. David J. Sugarbaker at the Brigham and Women’s Hospital in Boston, Massachusetts. She was declared cancer-free later that year.
Recovery from this disease is clinically unique because malignant mesothelioma is a rare, aggressive cancer typically diagnosed in older patients that, even with treatment, has a 6 to 9 month median survival rate. Mesothelioma, commonly caused by exposure to asbestos, typically only manifests after a 25-30-year latency period following exposure.
Today Heather raises funds to benefit two nonprofits that are dedicated to mesothelioma research and asbestos education. The Mesothelioma Applied Research Foundation and The Asbestos Disease Awareness Organization.
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