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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 themselves but their families and caregivers.
Rare Disease Day
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 role 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.
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.
Increasing Mesothelioma Awareness
Every year, approximately 90,000 people die from diseases caused by asbestos exposure. Asbestos is responsible for the rare disease mesothelioma, a deadly and rapidly spreading type of cancer for which there is no cure.
Approximately 3,000 Americans are diagnosed with mesothelioma each year. Mesothelioma affects the cells in the mesothelium, which is the membrane that protects various organs. The disease is often aggressive and commonly fatal, 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 and diagnose. Often, patients report 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.
Read more about the different types of mesothelioma, current treatments for mesothelioma, top treatment facilities, and the latest clinical studies and trials.
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. 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 ingested. 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 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.
Joining the Fight
The National Organization for Rare Disorders (NORD) is the U.S. partner for Rare Disease Day, working with EURODIS to bring together a global community for change. There will be hundreds of live and virtual events, with patients, families, lawmakers, and medical professionals participating. You can attend panels, presentations, webinars, resource fairs, summits, charity runs, marches, and rallies.
You can also raise awareness with visual representation. The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra and suffering from a rare disease. By wearing stripes, you can start a conversation that helps others learn about the prevalence and challenges of rare diseases. Take a picture of your striped look and share it on social media with the hashtags #ShowYourStripes and #RareDiseaseDay to join this celebration of the many faces of rare disease.
Every small act of connection serves to build a stronger, more vocal, more recognizable community for rare disease patients.
Legal Support for Mesothelioma Victims
On Rare Disease Day, we remember the victims of mesothelioma – those who have lost their battles and those who continue to fight courageously alongside their families and caretakers. There is much work to be done in developing advanced treatments for mesothelioma, and one day a cure, for this devastating disease. Until then, will continue to use our 100+ years of cumulative experience to fight for victim compensation and to expand mesothelioma awareness.
If you or a loved one are considering filing a mesothelioma lawsuit, our team of dedicated legal professionals is here to guide you every step of the way. We'll provide you with all the information you need, answer your questions, and ensure you understand your rights and options.
Contact SWMW Law
has been proudly standing with victims of mesothelioma and other asbestos-related rare diseases since 2012. Our team’s experience, dedication, and passion for justice make us fierce advocates and compassionate partners to families in need of a voice for their loved ones, especially as they contend with the challenges of a rare-disease diagnosis.
We invite you to contact SWMW Law if you wish to explore legal avenues relating to mesothelioma. Your battle is our battle, and we're committed to stand by your side and secure the justice you deserve.