Category: For Your Family
NIH Offers Help In Explaining a Mesothelioma Diagnosis to Children
Hearing the doctor say “you have mesothelioma” is a devastating blow to anyone. Most adults, however, have the education and capacity to understand the diagnosis, process the information and manage their emotions. However, when you try to explain mesothelioma and the complexities of the disease to your young children or grandchildren you will need to be patient and creative.
With so much emphasis placed on environmental issues recently, explaining that mesothelioma is caused by inhaling asbestos dust from a job held many years ago may be the easiest part. When it comes to explaining the treatment and prognosis, though, covering the basic facts may not be enough. More than likely the child will ask “why?” many times during the discussion.
The National Institutes of Health (NIH) is helping make the task easier by offering curriculum for children in grades 6 – 8 entitled “Rare Diseases and Scientific Inquiry.” The information helps students explore how scientists research rare diseases and treatments and learn more about the workings of the human body.
The rare disease materials were developed by leading scientists, educators, and curriculum experts, and combine cutting-edge medical research discoveries with state-of-the-art instructional materials.
The two-week curriculum includes lessons such as:
- What is a Rare Disease?
- What Causes Rare Diseases?
- The Importance of Medical Research
“The curriculum supplement will raise student awareness of rare diseases, including where to go for accurate information,” according to Stephen Groft, Pharm.D., director, Office of Rare Diseases Research, NIH. In addition, the material is designed to help students dealing with their own rare disease feel less isolated.
A rare or “orphan” disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. Mesothelioma, a rare cancer caused by exposure to asbestos diagnosed in 3,000 Americans each year, is one of the close to 7,000 designated rare diseases.
To request these materials for your child’s classroom contact the teaching staff and direct them to the NIH website.
On Veterans Day Honor All Veterans and Especially Those Struggling with Illnesses Such as Mesothelioma
Today is November 11, Veterans Day, a day to honor all United States military veterans. Initially established in 1919 to celebrate the end of World War I, the day is now a federal holiday honoring veterans of all wars with ceremonies and parades.
This year November 11 is once again declared the Veterans Day holiday through a proclamation by the President of the United States. Following is an excerpt from the proclamation:
“On Veterans Day, we pay tribute to our veterans, to the fallen, and to their families. To honor their contributions to our Nation, let us strive with renewed determination to keep the promises we have made to all who have answered our country’s call. As we fulfill our obligations to them, we keep faith with the patriots who have risked their lives to preserve our Union, and with the ideals of service and sacrifice upon which our Republic was founded.”
Unfortunately, to many of our veterans the day signifies another day of fighting a debilitating illness suffered during their service in the military. According to the latest U.S. Census Bureau data, there were nearly 21.9 million military veterans in the U.S. in 2009. Of those, about 5.5 million now suffer from some form of disability. A small number of these veterans are suffering from mesothelioma or asbestosis, caused by years of exposure to asbestos during their military service.
A recent study shines a light on the devastating effect of mesothelioma on veterans who served from World War II through the Vietnam era. The study presented at the American Society of Clinical Oncology conference and published in the Journal of Clinical Oncology analyzed 928 veterans. Researchers found the average veteran had about seven months to live after diagnosed with malignant pleural mesothelioma.
Due to the popularity of asbestos with the military, it has been estimated that nearly 30 percent of veterans who served between the 1940s and 1970s may have been exposed. For those exposed to asbestos, many factors determine whether or not they will develop mesothelioma. These factors include how much exposure, how long the exposure lasted, the fiber type and how they were exposed to the mineral. Age, sex, diet, family traits, lifestyle (including whether you smoke tobacco), and general health are also determinants.
Approximately 3,000 Americans are diagnosed with mesothelioma each year.
Allied Health Professionals Honored This Week, Provide Critical Support to Mesothelioma Patients
Mesothelioma, known to be caused by exposure to asbestos, is an aggressive cancer that is challenging to treat. When mesothelioma patients are not in the hospital for surgery or inpatient procedures, they are often receiving radiation, chemotherapy or having lab work done. With all these visits to the hospital and their doctors’ offices, mesothelioma patients and their family encounter allied health professionals nearly every day. This week, for all they do, allied health professionals are being recognized during National Allied Health Professionals Week. The week runs November 6-12.
According to ExploreHealthCareers.org there are 5 million allied health care providers in the U.S., who work in more than 80 different professions. Distinct from doctors and nurses, allied health professionals collaborate with physicians and other members of the health care team to deliver patient care services. They also provide a wide range of services including diagnostic, technical, therapeutic and direct patient care services.
Due to the rare and complex nature of mesothelioma, a large number of allied health professionals are needed to provide the appropriate level of support mesothelioma patients require. Allied health professionals are either technicians (assistants) or therapists/technologists. Technicians are trained to perform procedures, but are required to work under the supervision of technologists or therapists. Typically, a technologist gets a certificate with 2 years or less of higher education, and includes professions such as physical therapy assistants, medical laboratory technicians, radiological technicians and respiratory therapy technicians.
The field of allied health professions is one of the few areas of employment that are continuing to grow in the United States. According to the North Carolina Health Professions Data System, in North Carolina alone the number of allied health jobs increased by over 67 percent from 1999-2009. Healthcare jobs continue to be resilient to the current recession.
Since mesothelioma is such a complex disease, it is important for patients to receive multidisciplinary care from a team of specialists that is not limited to physicians or nurses. Following is a short list of allied health professionals that may be involved in the care of a mesothelioma patient:
- Respiratory Therapists. Evaluate, treat and care for patients with breathing or other cardiopulmonary disorders. Highly trained respiratory therapists may assume primary responsibility for all respiratory care, therapeutic treatments and diagnostic procedures.
- Anesthesiologist Assistants. Under supervision of licensed anesthesiologists (doctors), they operate anesthesia equipment, monitor patients, and assist in providing patient care before, during and after anesthesia.
- Cardiopulmonary Rehabilitation Specialist. Help patients understand and manage their heart or lung disease so they can live longer and do more, primarily by making sure the patient understands his condition and his medical regimen.
- Clinical Laboratory Science professionals. While not directly involved in the care of the patient, a medical technologist can discover the presence or absence of a disease. They typically maintain vital data for identifying and treating mesothelioma and other health conditions.
- Health Information Manager. These professionals manage and maintain all of the medical information vital to providing care to the patient. The health manager must capture each piece of information that is tracked every time health care personnel treats the patient including medical history, results of examinations, results of X-rays and laboratory tests, diagnoses, and treatment plans.
Allied health professionals have chosen a career where many must work long days, work under pressure and face life-and-death situations daily. If you see any this week, be sure to take a moment to thank them for their hard work and dedication.
For a list of Allied Health Professionals see ExploreHealthCareers.org .
Symposium to Focus on the Genetic Link to Mesothelioma
The University of Hawaii Cancer Center and Queen’s Medical Center are co-sponsoring the third annual Translational Cancer Medicine Symposium: “Mesothelioma-Melanoma Cancer Syndrome: Gene-Environment Interaction?” on December 2, at the Queen’s Conference Center in Honolulu, Hawaii. Researchers in cancer genetics will convene to discuss the recent discovery of the BAP1 genetic mutation and its link to mesothelioma, melanoma and possibly other cancers.
In a study led by Michele Carbone, M.D., Ph.D., director of the University of Hawaii Cancer Center, the researchers found that mutations of the BAP1 gene, which is involved in tumor suppression, might underlie mesothelioma in people with a strong family history of the disease. The study was designed to identify individuals at high risk of mesothelioma.
Mesothelioma is a rare form of cancer that can form in the lining of the lungs, abdomen or heart which was previously only known to occur as a result of exposure to asbestos. In another study, however, Carbone and his team have subsequently determined that erionite, a mineral used in road gravel in several US states, can also lead to the development of mesothelioma.
The Symposium will feature more than 20 global experts on cancer genetics including Carlo M. Croce, M.D., Director of the Human Cancer Genetics Program at Ohio State University; Joseph Testa, Ph.D., Director of the Genomics Facility at Fox Chase Cancer Center in Philadelphia and Michele Carbone, M.D., Director of the University of Hawaii Cancer Center.
“We are excited to bring these experts to Hawaii to work together to find ways to reduce the suffering and death caused by this mutation,” Carbone said in a prepared statement issued by the University of Hawaii Cancer Center.
Often called “asbestos cancer,” mesothelioma is highly aggressive and is resistant to many cancer treatments. Currently there is no known cure for mesothelioma, and the average survival time varies from 4 – 18 months after diagnosis. Approximately 3,000 Americans are diagnosed with the disease each year.
See the Symposium brochure for more information.
New York Father Raises Awareness for Peritoneal Mesothelioma As His Daughter Battles the Disease
A Mechanicville, New York father has taken his kayak to the Hudson River to help raise the public’s awareness of peritoneal mesothelioma. His 26-year-old daughter was diagnosed with the disease nine years ago and was given just twelve months to live. Since then she has endured six surgeries, and now, her father says, she is in constant pain.
Peritoneal mesothelioma is a form of cancer that is almost always caused by asbestos exposure and affects the lining of the abdomen. While there are close to 3,000 cases of all forms of mesothelioma diagnosed in the United States each year, less than 10% of those are peritoneal. The cancer, which is often associated with former industrial workers who were exposed to asbestos decades ago, is virtually unheard of among young adults.
Treatment of peritoneal mesothelioma is often similar to other cancers involving surgery, chemotherapy and radiation. However, physicians at the University of Pittsburgh Medical Center, known for treating mesothelioma patients, often use hyperthermic intraperitoneal chemoperfusion (HIPEC) as a means to battle the disease. HIPEC involves bathing the patient’s abdomen with heated high-dose chemotherapy drugs to reach the multiple tumors within the abdominal cavity. The news article in the TimesUnion.com did not indicate where the woman is being treated.
The man and his friends paddled from Schuylerville to Mechanicville. One friend was diagnosed with the same disease two years ago and wanted to offer her support to the family. The trio kayaked about 16 miles through locks 4 and 3. The man hopes to make this an annual trip with next year’s being bigger and better.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
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