Posted on April 2, 2016
Each year, ADAO dedicates April 1-7 to increasing awareness of asbestos and preventing exposure by bringing together experts and victims from around the world to share, learn, and take action. To view all 7 days of Global Asbestos Awareness Week (GAAW) contributors and content on our landing page, please click here.
Asbestos is a known carcinogen and there is no safe level of exposure. Since the 19th century, asbestos was widely used in construction, shipbuilding, and the automotive industry. Without a ban, asbestos remains legal and lethal in the USA and nearly 70% of the world today.
Today, we are sharing Heather’s Story: “The Value of My Life in Dollars and Tears”, Mavis’ Story: “I Fight on for All Our Meso Warriors Past, Present, and Future”, and Lou’s Story: “I Will Not Die in Vain”.
Heather Von St James, United States
My name is Heather Von St James. I was diagnosed in 2005 with malignant pleural mesothelioma and given just 15 months to live. Thanks to cutting-edge medical technology and a specialist who was willing to go the extra mile with me, I’m still alive, 10 years later. Not only alive but thriving, using my voice on a local, national, and global level to educate people about asbestos and mesothelioma.
It all started when I shared my story with ADAO, and things took off from there. I utilize social media and the vast, global network of bloggers to share my story. When I started hearing from newly diagnosed patients, or their loved ones, seeking information about this disease, my patient advocacy mission was born.
I’ve started using my voice in Washington, DC to bring about change as well. My husband Cameron and I host a fundraiser every year on the anniversary of my surgery to remove my lung. We call the day Lungleavin’ Day, and use the occasion as a fundraiser to give back to the mesothelioma community. To date we’ve raised over $25,000 for asbestos education and mesothelioma research.
Getting involved isn’t the avenue for everyone, but for me it was the best way to give back after my second chance at life.
Check out Heather’s Mesothelioma Cancer Alliance Blog by clicking here.
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Mavis Nye BCAh, United Kingdom
I have run the Mesowarrior’s UK Support Group now for seven years, starting as a partner to Debbie Brewer, who we sadly lost. In that time, I have raised awareness of mesothelioma, especially since having a successful response to the drug Keytruda, which has received accelerated approval for melanoma as a promising, innovative treatment while clinical trials are still under way for 22 other cancers. After a two-year trial at the Royal Marsden my tumors have shrunk to 1mil or less. My scans have now show no active Mesothelioma in the small tumors, they do not register on a CT scan any more, making my result the most exciting in the UK.
Preventing asbestos-related disease and helping others who have been diagnosed has become my passion and that of my husband Ray, so I have become The Patron with Ray as the Co-Chairman of the Hazmat Professionals Foundation, providing help and support to people who are likely to be affected by asbestos-related illnesses.
I also work for Mesothelioma UK and speak at all of their nurses’ conferences, and also for the British Lung Foundation, making their ‘Take Five Stay Alive’ video for their DIY Campaign and helping them when they need information about a patient.
I work for the NHS as a Research Patient Rep, helping with the setting up of drug trials.
This makes for a very busy life, but great satisfaction in giving back to others and as thanks to the people who saved my life as having being diagnosed in 2009 (after washing my husband’s clothes as a young bride). and I’m still here, thanks to so many people.
Check out Mavis’ blog One Stop Mesothelioma by clicking here.
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Lou Williams, Australia
I AM NOT GIVING UP! I have too much work to do!
After 10 years of unexplained chronic fatigue, I was diagnosed with peritoneal mesothelioma in late 2003 and then with pleural mesothelioma six years later. My father, who died of pleural mesothelioma in 1985 at age 54, had used asbestos products while working in the building trade in the early 1970s, and I was exposed to asbestos as a young child.
I took control of my cancer by undergoing surgery and chemotherapy — as well as by helping others get through the nightmare of living with mesothelioma and working for a global ban on asbestos.
By December 2014, after five years of treatment for pleural mesothelioma, my body had begun to shut down. Tumours were growing, and I needed fortnightly blood transfusions to stay alive. By April, I was on oxygen 24/7 and morphine for unbearable pain.
Then my doctor told me about a promising immunotherapy drug — Keytruda — which could be used in Australia for end-of-life mesothelioma patients. Infusions of Keytruda every three weeks for 11 months led to significant tumor shrinkage, and I was able to go off of oxygen. Best of all I had NO PAIN, a good immune system again, and many months of an excellent quality of life. In late February 2016, scans showed new tumors growing inside my lungs, and continued growth of the tumour in my diaphragm. I am no longer on Keytruda, but because of it I have been able to start another weekly course of chemotherapy in hope of stabilizing and maybe shrinking the tumors. Without Keytruda I would not have been able to have further chemotherapy treatment.”
Please join me and sign the petition to get Keytruda fast-tracked on the Pharmaceutical Benefits Scheme in Australia.”
To sign the petition to get Keytruda fast-tracked in Australia, please click here.