Despite all our scientific advances in medicine, hundreds of diseases remain classified as rare and difficult to treat due to lack of scientific research and evidence. Often, rare diseases share a constellation of symptoms with multiple other diseases and can be especially hard to diagnose. In fact, many rare diseases are commonly misdiagnosed or receive a delayed diagnosis due to not having enough information.
Unfortunately, not all diseases are equitably funded or researched. There are over 6,000 rare diseases, whose symptoms are varying and difficult to diagnose. These diseases can be chronic, progressive, degenerative, and life-threatening. They can result in physical disabilities, mental challenges, and the emotional strain of not knowing how to effectively treat one’s symptoms. Today, over 300 million people globally are living with a rare disease, affecting not only them but their families and caregivers.
Rare Disease Day
Each year, Rare Disease Day is observed on Feb. 28. In leap years, the day is observed on the rarest day, Feb. 29. Created in 2008, this globally-coordinated movement “has played a critical part in building an international rare disease community that is multi-disease, global, and diverse–but united in purpose.” Since its founding, Rare Disease Day has expanded from events hosted in 18 countries to over 100 countries in 2019.
EURODIS, the organization that coordinates Rare Disease Day, works with over 65 partner organizations toward achieving equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.”
Why Raising Awareness is Crucial
Rare disease advocacy means helping patients with the sometimes extreme financial burden brought by ongoing testing and treatment. For many, it can take years to achieve a diagnosis, with medical bills putting long-term treatment out of reach and, even more devastatingly, leave them struggling to meet their everyday needs.
One of the primary solutions is increasing access to quality health care and insurance coverage for all. The cause also advocates for increased collaboration in rare disease research, which needs to be coordinated internationally to serve patients. For this reason, Rare Disease Day also aims to raise awareness among policymakers, in order to increase funding and other resources to rare disease research and treatment.
According to the organization’s website, “Rare Disease Day is the opportunity advocate for rare diseases as a human rights priority at local, national and international level as we work towards a more inclusive society.”
Increasing Mesothelioma Awareness and Treatments
Mesothelioma is a rare disease for which there is no cure. According to the disease database at the National Organization for Rare Disorders, mesothelioma is “a rare form of cancer that affects the cells that make up the mesothelium. The mesothelium is the lining or membrane that covers and protects various internal organs of the body.” The most common form of mesothelioma affects the lining of the lungs and chest, but it can also affect the heart and testicles.
Often aggressive and commonly fatal, mesothelioma is known to spread quickly, with survival in the range of approximately one year under currently approved treatments. Like so many rare diseases, mesothelioma’s symptoms can be hard to pinpoint into a diagnosis. Often, patients describe feeling weak, experience night sweats, fever, weight loss, cough, difficulty breathing, and loss of energy. Mesothelioma treatments are becoming more widely available, but they have varying rates of effectiveness on patients.
How Does Asbestos Cause Mesothelioma?
Once celebrated for its many useful qualities, asbestos is now more widely known as the cause of fatal diseases like mesothelioma and asbestos lung cancer, which kill approximately 900,000 people each year. For nearly a century, asbestos was used in metal work, manufacturing, and in building materials across many industries, because it was inexpensive, lightweight, strong, and heat resistant
Between the 1950s and the 1980s, nearly every home, school, and workplace across every state contained some sort of asbestos material. Because asbestos fibers are flexible, lightweight, strong, and naturally heat resistant, it was commonly used as insulation or to strengthen other materials.
However, when products made with asbestos are disturbed, whether from installation, cleaning, repair, or removal, millions of undetectable asbestos fibers can be released into the air. This happened frequently when pipes were cut and fitted, or simply from the everyday use of heat shielding gloves or aprons.
The tiny, airborne asbestos fibers can then be inhaled or swallowed. Once lodged inside the lungs, soft tissues, or other organs, asbestos causes lasting and often fatal damage. Unfortunately, the risks of asbestos-related injury and disease are often spread to a worker’s family when asbestos fibers travel home on a worker’s clothes, skin, hair, and belongings. Second-hand asbestos exposure can also happen to anyone working or passing through a site where asbestos was present.
Fighting for Hope
On Rare Disease Day, SWMW Law remembers the victims of mesothelioma—those who have lost their battles and those who continue to fight courageously alongside their families and caretakers. We advocate fiercely for the rights of victims of asbestos exposure, and mesothelioma is one of our core practice areas.
There is much more work to be done in developing advanced treatments for mesothelioma, and one day a cure for this devastating disease. Until then, SWMW Law’s attorneys will continue to use their decades of experience to fight for victim compensation and expand mesothelioma awareness.
To learn more about our team, our services, and how we can serve you, contact our team today.