A rare disease, by definition, must affect only a small percentage of the population. In the United States a rare disease is defined as a disease that affects fewer than 200,000 people in the country. Worldwide, there are over 6,000 rare diseases that affect over 300 million people. Each disease is unique in its effects and treatment, and due to the rare nature of these diseases, they often lack the same resources and treatment options as more common health problems. People suffering from rare diseases, along with their caretakers, often have difficulty finding experienced doctors. Often it requires multiple appointments and experimental medications to determine a health care path. Managing a rare disease can be physically, emotionally, and financially challenging. It is extremely stressful without support systems of others who suffer from the disease.
Every year there is a specific day that is set aside to recognize these diseases, usually the last day of February each year. This year, it will be February 28, 2019. This year’s theme is “Bridging Health and Social Care”. What exactly does this mean? It is focusing on the challenges of coordinating care between the medical field and social and support services. If you have been fortunate enough not to be affected by one of these diseases, you would be astounded by the amount of time and energy that a patient or a caregiver expend daily to fight their “rare disease.”
Mesothelioma falls under the “rare disease” category. Approximately 3,000 people are diagnosed with this disease annually. While there are many treatment options available at Mesothelioma Centers and larger health centers, these facilities are not always easily accessible.
As patients and families struggle with this disease, we know there are options: there are numerous support services for this disease, as well as travel assistance programs which may be available to you. Every week, we see patients from all over the world come through our doors with hope. Many patients need to travel far and wide to arrive at the doorsteps of a Mesothelioma Center. However, by travelling to a major Mesothelioma Center, patients are giving themselves the best opportunity to fight this disease. The healthcare teams at Mesothelioma Centers understand travelling is not easy. Centers are usually set up with social and support services to help during these challenging times. Experience from treating others has taught us what helps. Although mesothelioma can be frightening as a “rare disease,” the medical community is making great strides to fight it. We are extending lives, and working towards a cure.
As you educate yourself about the options in front of you, know that many others have been in your shoes and followed this path. When feeling overwhelmed by it all, reach out to a Mesothelioma Center, ask questions, and become connected with our supportive and tight-knit community.