In March we shared Lou Williams’ story as she struggles with both pleural and peritoneal mesothelioma. Through it all, Ms. Williams has maintained a positive attitude and has fought tirelessly to keep others from having to endure what she has gone through. In this article, we outline Ms. Williams’s advocacy efforts and her goal to end the use of asbestos in Australia and throughout the world.
Although Louise “Lou” Williams is a Mesothelioma Survivor – it has been nearly 10 years since she began her treatments – she is a mesothelioma patient advocate first. Nearly every day you can find her tweeting about another mesothelioma treatment, another company being held accountable in Australia for placing others in harm’s way, or about a new activity to ban asbestos. But many of her tweets are focused on the lives of the other mesothelioma warriors battling the cancer.
Ms. Williams’s positive, uplifting comments can also be found on her Facebook page and on the social media pages of her fellow mesothelioma warriors. Her messages encourage them to fight another day, or to call their doctor’s office and get in ASAP. Sometimes she simply sends a ♥ across cyberspace. Even as Ms. Williams endured another chemotherapy infusion, she reached out to her good friend Jan Egerton in England as she also struggles with the disease to say “Holding yr hand tonight xx,” and “cocooned luv and hugs.”
It All Started with her Father’s Mesothelioma Diagnosis
At 58 years old, Ms. Williams is more aware of the dangers of asbestos than she ever wanted to be. Ms. Williams watched her father die a painful death from mesothelioma in 1985. He was just 54-years-old and had worked in the building industry, where he was exposed to asbestos.
Appalled to learn that her father’s life was so quickly taken through no fault of his own, Ms. Williams soon began telling “anyone who would listen” that asbestos is an abhorrent mineral that leaves those exposed to it with devastating health conditions.
Then, in a tragic turn of events, Ms. Williams herself was diagnosed with the same cancer, brought on by the very same asbestos fibers that ultimately killed her father. As a child, Ms. Williams helped wash her father’s clothes, which were often covered with asbestos dust from work.
While fighting for her own life, Ms. Williams took on the asbestos industry to halt the use of asbestos and asbestos-containing materials that were ubiquitous in Australia.
“I believe spreading the word that there is no safe asbestos, and asbestos kills is helping to keep me alive,” said Ms. Williams in an e-mail to MesotheliomaHelp.
Raising Awareness of the Dangers of Asbestos
Just as Ms. Williams was shocked that being exposed to a small amount of the toxic fiber left her vulnerable to mesothelioma, many of the others she educated were also dumbstruck.
“Being a woman and living with this cancer has been an eye opener for many people,” said Ms. Williams.
In order to get the word out to the masses, Ms. Williams first had to find out everything she could about her treatment options, support options and where she, and others battling mesothelioma, could turn for help. She found that those options were limited, if not nonexistent.
Acting quickly, Ms. Williams formed a partnership with Asbestos Diseases of Victoria (ADSVIC) in January 2004, just months after she received her diagnosis. As Ms. Williams tells it, “I made contact, became their first client, and set about getting a support group happening with others.” Ms. Williams eventually became Vice President and joint awareness/advocacy coordinator on the board of ADSVIC and continued to rally support in Australia to end the use of asbestos.
Ms. Williams eventually realized that there was advocacy and awareness work to be done on a global scale, and she left ADSVIC (which is now AsbestosWise) and joined the Bernie Banton Foundation, an Australian group that provides support and information to asbestos-related disease sufferers and their families while Raising Awareness of the Dangers of Asbestos.
Fighting for Changes in Australia
Perhaps Ms. Williams’s greatest fight now is in her petition to the State of Victoria, Australia to join the National Asbestos Strategic Plan. According to an article in Invest in Australia, the aim of the plan is “to prevent exposure to asbestos fibres, in order to eliminate asbestos-related disease in Australia.” Victoria is the only state in Australia to not join the plan.
Always positive in outlook, Ms. Williams told MesotheliomaHelp, “Once this is in place then we will see in Australia quicker united action on awareness, education and removal on a prioritised scale.”
She is also fighting to see Asbestos Awareness Month recognized throughout the country. In a blog entry in early October, Ms. Williams said, “Having Asbestos Awareness Month happen is so important for me to see in my lifetime. Bring on next year and a nationally recognised Asbestos Awareness Month!”
Of course, educating the public about mesothelioma is just as critical. While the United States has a Mesothelioma Awareness Day set aside on Sept. 26 each year, Australia does not have such a day. Ms. Williams is campaigning to have Sept. 26 recognized as National Mesothelioma Day in her country. Ms. Williams said in her blog, this Awareness Day “would be terrific to see in my lifetime. This would then become a global Mesothelioma Day celebrated on Sept. 26!”
Never Going to Give Up
Ten years after her initial diagnosis, and having suffered through four surgeries, 36 rounds of chemotherapy, and countless days in the hospital, Lou Williams faces another round of chemotherapy. But she remains positive. She sees the cancer that took her father’s life and threatens hers as a means to educate the public about the dangers of asbestos — the only known cause of mesothelioma. She has turned the tragedy that has befallen her and her family into a sounding board to fight for the lives of others who may have been exposed to asbestos.
Ms. Williams has received countless awards and recognition for her dedication, focus and perseverance to ensure
asbestos is banned and no one else suffers from a disease that is caused through no fault of their own. In June, the Asbestos Disease Awareness Organization (ADAO) announced that, for the first time, Ms. Williams and two other honorees will each receive the Alan Reinstein Award at the Asbestos Awareness Conference in 2014. The award is named for the husband of ADAO’s founder Linda Reinstein and recognizes individuals’ commitment to education, advocacy and support to countless patients and families around the world.
In a June article in The Examiner, Ms. Williams said she “will raise awareness for asbestos and its dangers until her last breath.”
“If I can help to save even one life,” Ms. Williams told MesotheliomaHelp, “I will be happy.”
Follow Lou’s mesothelioma battle and advocacy efforts at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”