The annual ADAO Asbestos Awareness Conference focuses on educating the public about asbestos-related diseases, and also providing support to people with those diseases. At this year’s conference, Linda Reinstein, ADAO Executive Director and Co-founder, shared some tips and information for people living with asbestos-related diseases.

Linda Reinstein, of Redondo Beach, California, has herself experienced the devastating effects of asbestos-related diseases. Her husband Alan, former president of ADAO, died from mesothelioma in 2006 after being diagnosed in 2003 at the age of 63. Alan Reinstein was exposed to asbestos more than fifty years before his diagnosis.

Linda Reinstein’s conference session, entitled “Patient Advocacy and Matrix of Care,” focused on providing advice to those who have been exposed to asbestos, or diagnosed with an asbestos-related disease. Reinstein said during the session, “It is all about taming chaos, making informed choices for today to make the future easier, and living your life.”

Reinstein noted that people diagnosed with asbestos-related diseases are faced with an array of life-changing challenges ranging from physical and psychological to financial and legal issues. She believes that for victims of asbestos, becoming informed is crucial, because “Knowledge…mitigates the trauma-induced psychological paralysis.”

She also encouraged people undergoing treatment for asbestos-related diseased to take charge of their treatments, by making sure they understand their treatment options and choose what they feel is best for them.

Reinstein stressed the importance of working with friends and family, and allowing them to help instead of trying to manage alone. Friends and family, she said, often want to help but aren’t sure what they can do. When that happens, it’s ok to tell them what you need.

During her session, Linda Reinstein touched on the fact that legal issues are often an integral part of asbestos-related disease diagnosis. Her acronym—“LIFE”—she says stands for the Legal, Insurance, Financial, and End-of-life issues that all patients will face in the future.

She also shared her top ten tips for living with an asbestos-related disease:

1. Stay informed and organized
2. Trust your instincts
3. Join a patient network (or caregiver network if you’re a caregiver)
4. Choose at least two advocates to help you coordinate treatment and care
5. “Live Life”—use whatever tools are helpful
6. Accept that your life has developed a new standard of normal, and work with it
7. Build an expert medical team. Don’t be afraid to pick and choose who you feel most comfortable with.
8. Understand your insurance policies
9. Evaluate your finances, and your legal situation
10. Talk—to your spouse, family, friends. Share your fears, and listen to theirs, too.

This entry was posted on Tuesday, April 22nd, 2008 at 9:37 am and is filed under Asbestos Exposure. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.