Approximately one in ten Americans are impacted by rare and genetic diseases, and The Church of Jesus Christ of Latter-day Saints is raising awareness and providing support for families who experience these life-changing conditions.
“The early stages of discovering a rare disease include shock and confusion,” Sister Joy D. Jones told the Church News. “The rare disease community works together to provide support for each other, but I hope we can all recognize their challenges and wrap our arms around them. I hope we can better comprehend what these families are going through and help them feel that they are not alone. They are loved, valued and needed in the Church.” The Church News recently published an article detailing the story of one Latter-day Saint family impacted by disease and how they found support and comfort in the Church.
In March 2017, 12-year-old Ethan Bruns stood in front of about 300 people at the Utah Rare Disease Symposium and shared his story.
At age 8, what his parents initially thought was the stomach flu almost shut down his kidneys, turned his skin yellow and left him unable to move on a hospital bed.
Eventually doctors ruled out a food-born illness related to E. coli, and Ethan Bruns was diagnosed with Atypical Hemolytic-Uremic Syndrome, a rare immune deficiency disease.
