According to a story from the Sun Herald, one in ten Mississippi residents suffer from one of the 7,000 diseases that are considered ‘rare’ in the United States. In the US, a disease is categorized as rare if it affects less than 200,000 people in the country.
400,000 people in Mississippi have one of these rare diseases, and nearly half of them are children. A couple of state senators from the state’s southern coast, Philip Moran and Brice Wiggins, were struck by the statistics, and sponsored a bill that just passed the Senate. This bill calls for the formation of a Rare Disease Advisory Council. The council should help disease patients find medical professionals that are understand their conditions best. In addition, it could allow for Mississippi more opportunities to pick up federal funding for rare disease research.
Sadly, it is a great challenge to find medical specialists that have a solid understanding of many rare diseases, or has even heard of many of the specific conditions. Getting treatment is practically impossible for many of the disorders. An example is Joseph and Dona Krystosek’s son Levi, who was born with Jansen’s metaphyseal chondrodysplasia. This condition is so rare that it only affects six people in the country. They had to travel to Chicago in order to meet with someone who had experience treating his disorder.
