The MCA BlogConnecting with others one story at a time
As a young girl growing up in the Black Hills of South Dakota, Heather Von St. James loved wearing her Daddy’s work coat, the type that she could wrap her whole body inside. It was one of those large construction jackets and was often covered with white flecks of dust. There was something about wearing it that made her feel closer to him, as if he was enveloping her instead of four pounds of nylon. Whenever she had chores outside––whether to feed her rabbits or fetch the mail––she would slip it on and head out to brave the bitter northern cold.
Three decades later, that same coat with the white flecks became much more than a childhood memory. Heartbreakingly, at age 36 and just three months after the birth of her first child, she was diagnosed with malignant pleural mesothelioma. It turned out that those white flecks were asbestos dust brought home by her father from his construction job, and she was exposing herself each time she put the jacket on.
“I believe I was exposed from my father’s work clothes,” Von St. James, now 44, said in recent interview. “He would come home with a white coat, white shoes and white pants, all covered with drywall dust containing asbestos,” she remembered. “I would always wear my Daddy’s jacket. He hung it in the utility room––it was always there. The dusty boots were always there.”
“I’m angry because it could have been prevented, but anger is a negative emotion,” she added. “I’ve turned my anger into action to keep people from being exposed to asbestos.”
Unfortunately, Von St. James’ story is now one that more and more people are beginning to know. An increasing number of relatively young women are being diagnosed with mesothelioma and other asbestos-related diseases. Some of them, like Von St. James, had no known work-related contact with the substance; they apparently were exposed to asbestos dust through a family member who regularly brought it home.
And like Von St. James, many of these women have become advocates in the fight to raise awareness on the dangers of asbestos-related diseases. As a result of their shared misfortune, Von St. James became part of a tightly knit group of women who later became activists and extremely close friends.
Von St. James, Linda Reinstein, Janelle Bedel, Louise Williams and Debbie Brewer were drawn together by a terrible fate, but instead of deciding to simply accept it, they chose to rewrite it. Their advocacy work has been aimed at not only being a support system for fellow victims but also serving as that resounding voice against this preventable disease.
They initially met at conferences and/or through their mutual advocacy work on behalf of asbestos victims. Close friendships quickly formed, and starting in 2008, they developed a social media network on Facebook to provide far-reaching support to enhance their activism.
Crucially, online social networking enabled the women to expand their spheres of influence and support to other women on a global basis. “As a result of technology, I’ve been able to meet and work with people from around the world,” said Reinstein. “The power of social media proves there are no boundaries. We can connect and share with people in a millisecond.”
“The New Patient Profile”
This ever-growing and progressively interconnected online community has become even more important as many newly diagnosed mesothelioma sufferers do not fit the established profile for victims of the disease.
Mesothelioma and other asbestos-caused diseases have a lengthy latency period, and most cases of this deadly cancer are diagnosed 30 years or more after the initial exposure. In the past, mesothelioma has traditionally been considered to be an older man’s disease that primarily affected men who worked around asbestos long-term, chiefly in shipyards and construction work.
However, advocates believe, and anecdotal evidence indicates, that an increasing number of women are also being affected, including many whose primary exposure came from family members.
“Younger women under the age of 50, with no known occupational exposure, are being diagnosed with mesothelioma and other asbestos-caused diseases,” said Reinstein. “That’s the new patient profile.”
Reinstein is president and co-founder of the Asbestos Disease Awareness Organization (ADAO), which she founded in 2004 after her husband, Alan, was diagnosed with mesothelioma. She has testified regularly before U.S. congressional committees and given speeches to international organizations on issues involving asbestos exposure and asbestos-related diseases.
“When Alan got sick in 2003, the most common patient was a male with occupational exposure, ages 68 to 73,” Reinstein said. Then, in 2006, she began noticing an emergent casualty group. “I would see more women diagnosed than men,” she added. “There was definitely a pattern, but we really didn’t know why.”
Louise Williams, a wife, mother and grandmother, from Macedon, Australia, has been a frontline patient advocate ever since her diagnosis in 2003. Williams’ father died of mesothelioma in 1985, and she was exposed while shaking out his dust-covered work clothes and later while working in a Melbourne office riddled with asbestos.
Williams, 58, said in an email interview from Australia that she too has seen increasing numbers of women diagnosed with asbestos-related diseases. Some of these women were exposed firsthand while working in buildings containing asbestos, but she noticed that “more women are being diagnosed officially with mesothelioma, due to being exposed through their partners working with it and bringing fibers unknowingly home.”
So far, however, no clear data exists showing the extent of these escalating diagnoses of women with these type diseases, or the reasons why.
Daughters Of The Dust
Just last month, Reinstein gave eulogies for two of the young women in her original group, who both died after battling mesothelioma for years. Janelle Bedel, 37, of Rushville, Indiana, died June 19 after a six-year battle––soon after raising support for a Mesothelioma Awareness Day. Debbie Brewer, 53, of Plymouth, England, died June 9 after a seven-year fight that started back in 2006. = Brewer, who also worked as an advocate for mesothelioma victims, had said that her only exposure to asbestos came from hugging her father, a dockyard worker, when she was a child.
Bedel was 31 and mother to a four-year-old son when she was diagnosed with mesothelioma in 2007. She passed away on June 19, and it still remains unclear exactly how or why she came down with the disease. Her death––and her work as an advocate to raise public awareness––is a vivid reminder of the human face and suffering behind the asbestos statistics.
She spent the last six years battling for her life, undergoing surgery, chemotherapy, radiation, and other treatments, while at the same time working relentlessly to raise money for research and fighting to ban asbestos in the United States and worldwide.
Bedel was nicknamed “Wonder Woman” for her tireless work ethic and indomitable fighting spirit. Her efforts were even cited in the Congressional Record, and U.S. Senator, Joe Donnelly (D-Indiana), wrote her a letter stating, “You have turned your own heartbreaking situation into a source of inspiration. . . Your focus on raising public awareness of the dangers of asbestos exposure, as well as your work to eliminate it, even while enduring difficult medical treatments and precious time away from your husband and son, has motivated many to support this important cause.”
At Bedel’s funeral, Reinstein, ADAO’s president, memorialized Bedel as a heroic advocate for asbestos victims. “As we grieve, we must continue our fight for a global asbestos ban in Janelle’s memory,” Reinstein said in her eulogy. “Our Wonder Woman will live forever in our hearts and in our work.”
Debbie Brewer of Plymouth, England, died of mesothelioma on June 9, just 10 days before Bedel passed away. In interviews, Brewer had said that she was exposed as a child from hugging her father after he came home from work as an asbestos lagger at the Royal Navy’s Devonport Dockport. Lagging is a type of thermal insulation used on pipes, boilers, and many other items found on ships. The U.S. and British navies, among others, routinely used lagging made with asbestos for decades.
Brewer had stated that her father, Philip Northmore, regularly scrapped asbestos from pipes at work and would come home with his overalls covered in asbestos dust. Northmore died of asbestos-related lung cancer in 2006.
That was the same year that Brewer was diagnosed with mesothelioma. The mother of three children, Brewer steadfastly continued her advocacy work for other victims up until the time of her death last month.
Invisible Particles, Inevitable Results
Louise Williams’ father also worked with asbestos on a longstanding basis. He was a plasterer and was repeatedly exposed to the carcinogen while working on building sites in Australia where asbestos was used as an insulator around pipes, in ceilings, and as filler in plaster boards.
Her father’s painful death led Williams to become an advocate regarding the dangers of asbestos. “I would spread the word that anyone working with asbestos should be careful and take necessary precautions, never realizing that one day I would have mesothelioma,” she stated. “Until I was diagnosed, I did not realize that anyone exposed––even minimally––could later be diagnosed with an asbestos-related disease.”
Williams recalled first coming in contact with the deadly material as a small child when her father made a cubby house for her and her sister using leftover asbestos fiber sheeting. Later, her dad would come home from work covered in that same insidious dust, and she or her mother would shake them out before putting them in the washing machine. Williams also used a vacuum cleaner to clean out her father’s car, which was blanketed in asbestos dust.
Later, she unknowingly worked at an office in Melbourne that was full of asbestos. “For three years, I breathed in invisible asbestos particles dislodged from the suspended ceilings and insulator cables,” she recalled in an email.
“Since being diagnosed, I have been a strong advocate, campaigner and given support to many people newly diagnosed and living with an asbestos-related disease,” she wrote. “I am a voice––while still well enough––for those who have died, for those who are living with mesothelioma and are unable to speak out due to health reasons, and for those who are yet to be diagnosed in the future––namely the next generation.”
The Changing Face Of Mesothelioma
Perhaps no one fits the profile of the new mesothelioma victim better than Heather Von St. James, a little girl from South Dakota who just wanted to wear her Daddy’s jacket. 2005 marked the year that was supposed to change Von St. James’ life; little did she know just how much.
Her doctors gave her fifteen months. If she were to do nothing and simply accept her fate, that was all she would have left. With a prognosis as dire as hers, it called for a very aggressive treatment plan, one that most people don’t live through. Her doctors informed her that if she underwent conventional chemotherapy and radiation therapy, she could expect to live around 5 years.
Instead, she chose the option that would give her the best chances of beating her cancer for good. On February 2, 2006, she underwent an extensive surgical procedure called an extrapleural pneumonectomy. This operation removed her affected lung, plus the linings around the lung, her diaphragm, and around her heart. The operation was performed by Dr. David Sugarbaker at the Brigham & Women’s Hospital in Boston, and in the end, was a success.
Von St. James’ battle is now over seven years strong, and she shows no sign of being anything but a survivor. She serves as a source of hope for other victims facing this disease by participating in and creating awareness campaigns and will only continue speaking at conferences that seek to eliminate health and treatment issues surrounding asbestos.
Having lost two of her closest friends this year––both tireless advocates in this ongoing fight––she understands more than ever how much louder her own voice needs to be. Although added safety measures are being taken in the workplace, family members and women at home are continually being put at risk. It is them, the daughters of the dust, that are the changing face of mesothelioma. It is not only up to resilient women like Von St. James, Reinstein, and Williams to speak out about this spreading illness. It is up to all of us to stand up against the misuse of this deadly carcinogen and become a part of the ever-growing, interconnected mesothelioma community, because only then will we have the chance to rewrite this needless fate.