Leap Year Day 2020 is the rarest of all 24-hour periods in that it only occurs once every four years. Few, if any, days would be more appropriate for this year’s Rare Disease Day.
A rare disease is defined as a medical condition affecting less than 200,000 people. Every year, the last day of February brings much-needed attention to rare diseases and the 300 million people who suffer from them.
Mesothelioma, a disease caused by exposure to asbestos, is part of this category with 3,000 new cases annually, well below the number of victims to qualify for this designation.
The Challenges Rare Disease Victims Face
Admittedly, mesothelioma has a higher profile due to the discovery that asbestos, a common mineral once used in manufacturing and construction. Still, physicians see the impact on those suffering from this and other rare diseases. Oftentimes, the stigma can result in feelings of isolation and loneliness due to the limited number of “peers.” Challenges also exist in securing not only a diagnosis but also medical care.
Rare Disease Day’s mission is to increase awareness for a variety of groups. That includes:
- Providing the support system patients need
- Identifying networks where patients can connect with others dealing with the same affliction
- Encouraging insurers to provide better coverage
- Requesting that the medical community provide more resources
While mesothelioma and many other rare diseases are incurable, victims and their family members can take the “leap” to make connections and create communities with those experiencing the same challenges.