Every year, people with rare disorders and their families, friends and communities mark Rare Disease Day, an initiative launched by the National Organization for Rare Disorders (NORD). In 2019, the day will be marked on February 28 with events, awareness programs and activities across the country. There are over 7,000 rare diseases that affect 25 to 30 million Americans.
Rare Disease Day 2019
The slogan for Rare Disease Day 2019 is “Show Your Stripes,” in honor of the zebra, the symbol of Rare Disease Day. “When you hear hoofbeats, think horses, not zebras,” is a common expression in the medical world. However, zebras – unique and rare – are sometimes the cause of the hoofbeats, just as rare diseases are at times the correct diagnosis. By drawing more attention to these conditions, NORD aims to increase correct diagnoses, research and treatment for improved outcomes. Almost 90 percent of these rare disorders still do not have an FDA-approved therapy or treatment, so more attention to these conditions is particularly urgent.
Mesothelioma: A Rare Cancer
One such rare disorder that will be highlighted on Rare Disease Day is mesothelioma. This is a rare type of cancer that emerges in the cells of the mesothelium, the lining that covers internal organs like the lungs or heart. The mesothelium is comprised of special mesothelial cells, which begin to grow uncontrollably and may spread to other tissues or organs of the body.
In most cases, mesothelioma is a disease of older adults, and 70 to 80 percent of mesothelioma cases are caused by asbestos exposure on the job. Because mesothelioma can take a long time to emerge, people may begin to see active symptoms of the cancer 30 to 50 years after their original work with asbestos. Each year, around 3,000 new cases of mesothelioma are diagnosed across the country, but some people may not be properly diagnosed. Because mesothelioma is an aggressive cancer, it is important for people to receive a correct diagnosis. In most cases, a mesothelioma prognosis will be poor, with a limited life expectancy.
Symptoms and Diagnosis of Mesothelioma
Some of the early signs of mesothelioma may be shortness of breath, chest pain, night sweats, fatigue, muscle weakness and a dry cough. Some of these symptoms are similar to those of other cancers and respiratory disorders, but mesothelioma may be especially suspected if a patient worked with asbestos in the past.
In order to diagnose mesothelioma, a physician may use chest X-rays, blood tests, lung function tests, CT scans and MRIs to determine the status of a patient’s lungs. Even when there are strong indications of mesothelioma through imaging results, a biopsy is generally needed to confirm the diagnosis of cancer. The physician will use these results to “stage” the disease and determine the level to which it has progressed.
Mesothelioma Treatment: New Research and Options
Because the prognosis is often very serious, mesothelioma patients may be concerned that even available treatment provides little long-term promise. Some forms of treatment include surgery to remove the affected tissues, radiation therapy and chemotherapy. All three of these types of treatment may be used in order to prolong the patient’s life.
Various new initiatives aim to improve the outcomes for patients with mesothelioma. One orphan drug, Alimta, has been approved since 2004 for mesothelioma patients who cannot receive surgery. Immunotherapy, genetic therapy and advanced chemotherapy drugs all offer new possibilities for mesothelioma patients. Some of these technologies aim to alter the body’s immune system to reject the cancer cells or to change the genetics of the cancerous cells in order to eliminate them from the body.
Highlighting Mesothelioma on Rare Disease Day
Mesothelioma highlights the importance of Rare Disease Day, drawing awareness to and supporting research for rare disorders like this type of cancer. Clinical trials and advanced research are showing signs of progress in creating treatments that can extend mesothelioma patients’ life expectancy. People with mesothelioma and their families will participate in activities across the country drawing attention to the need for additional research. In addition, people affected by mesothelioma may want to fight for justice, especially since so many of these cases were caused by exposure to asbestos on the job. Asbestos trust funds and lawsuits have also helped significantly to raise the profile of mesothelioma at a time when more investigation is desperately needed.