Each year, the last day of February marks Rare Disease Day, which is recognized and celebrated by more than 70 countries worldwide. This year, the seventh international year of recognition, the slogan is "Join Together for Better Care." Mesothelioma attorneys at Pintas & Mullins join the European Organization for Rare Diseases (EURODIS) and the international medical community in fighting to help those diagnosed with rare disease.
The main objective of establishing a Rare Disease Day is to raise awareness about the real-life impact of rare disease on public health and wellbeing. It is meant to put a human face on rare diseases, to enact change through politicians, policy makers, medical professionals, industry representatives, researchers and countless others. More than 1,000 events take place around the globe every year, with hundreds of thousands of participants hoping to advance research for rare diseases.
In the United States, rare disease research is headed by the National Institute of Health and many of its branches, including the FDA Office of Orphan Product Development and the National Organization for Rare Disorders. The U.S. identifies about 7,000 diseases as "rare," about 80% of which are genetic in origin. About half of all rare diseases affect children, who face severe challenges such as delays in diagnosis or repeated misdiagnosis, lack of support services for family, and psychological burden.
Information and research concerning rare diseases is typically insufficient; Rare Disease Day offers a glimpse of hope to fighters, strengthens their voices, and inspires continued policy actions. A disease is categorized as rare when it affects less than 200,000 American patients at any given time.
Initial misdiagnosis is common, which rings particularly true for mesothelioma, which takes decades to manifest through physical symptoms. Signs of mesothelioma include:
• Pain, swelling or lumps in the torso and abdomen
• Trouble breathing
• Unexplained weight loss
Mesothelioma is a rare form of cancer that usually starts in the lungs, however it can also originate from the tissue that lines the stomach, heart or other organs. It is often mistaken for lung cancer or other respiratory disorders, however, it is markedly different than lung cancer.
The only known cause of mesothelioma is exposure to asbestos, which is a fiber-like material that was commonly used in pipefitting, insulation and friction products until it was outlawed in the late 1970s. Every patient diagnosed with mesothelioma was, at some point in their life, exposed to asbestos, whether directly or indirectly.
At present, treatment for mesothelioma is the standard line of care for most cancers: a combination of surgery, chemotherapy, radiation, and immunotherapy or vaccines. There are some clinical trials ongoing to for mesothelioma treatment, however, research remains minimal.