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It takes a multidisciplinary team to treat a person with a rare disease. Along with highly experienced and accomplished medical scientists there needs to be individualized care. Included and embedded in this specialized treatment is the skills of coaching. We are all very familiar with the roles that coaches play in sports. From many different definitions some of the most successful sports coaches have mastered different skill sets. Some of the skills are analyzing performances, instructing [...]

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We usually write about our experiences while caring for patients with malignant mesothelioma. As always I cannot remember when I left a patient and didn’t have a new respect for how patients with rare diseases like mesothelioma deal with the impact on their lives. Today I read an article about a woman who had been stripped of her job, hobbies, and her life as she knew it by a rare disease other than malignant mesothelioma.  The unique perspective of rare diseases has always fascinated me – [...]

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October was Health Literacy Month and November is National Family Caregivers Month. Both of these special months highlight the importance of education, support, and understanding when dealing with or caring for a loved one. When faced with a diagnosis of malignant mesothelioma, understanding of the disease and what to look for helps both the patient and the caregiver. The definition of health literacy from the Affordable Care Act of 2010 is “the degree to which an individual has the [...]

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Malignant mesothelioma is an aggressive cancer. For some, the journey is long and for others it can strike quickly and cruelly. It is imperative to remember that the person with the disease is someone who usually has a rich life filled with family, friends, and relationships before the diagnosis. While malignant mesothelioma is a rare disease, unfortunately the distress it causes can be life altering for those left to deal with the aftermath. The person diagnosed with malignant mesothelioma [...]

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Science is advanced through research, and the research process begins with clinical trials. Many us of have grown more familiar with the clinical trial process with the search for a vaccine for COVID-19. As the search continues for a cure for malignant mesothelioma, it is imperative that people involved in the mesothelioma community continue to be aware of what scientists are researching at this point for potential cures and quality life-extending treatments. Chemotherapy has been the [...]

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