According to EurekAlert!, covering a study conducted by Oregon State University, individuals living with rare diseases are more likely to experience a poorer quality of life. They are at high risk of experiencing depression, high levels of anxiety, physical pain, fatigue and isolation from society. With over 350 million people in the world suffering from 7,000 difference types of rare diseases, one would think there would be a grander push to help aid those struggling with life and disease management. Thankfully, people like Kathleen Bogart of the College of Liberal Arts at OSU, thinks so too.
Bogart, an assistant professor, believes that these individuals with rare diseases should be provided with psychosocial support groups, because right now their quality of life is far from where it should be. More often than not, people with within the rare disease community are individualized and seen as vastly different from one another, and it’s very unlikely that someone with a rare disease will meet someone locally who shares that exact disease. Yet, while they might not know people with the same disease, others with differing rare diseases have similar and almost parallel experiences.
Many with rare disease deal with misdiagnosis, leading to mistreatment, excessive medical bills, and an often unnecessary drawn out treatment process. This process often distances these individuals from society, leaving them feeling extremely isolated. Researchers for this study conducted a survey to 1,300 Americans suffering from all different types of rare diseases, and based off the results their quality of life is 70-85% worse off than the average population.
More specifically, 75% face higher levels of anxiety and pain, 70% deal with more intense depression, 85% experience worse fatigue and physical functionality and 80% express more difficulty participating in society. There is no denying that these individuals face a more stressful life than the average American.
Researchers of the study hope that their results will gain the attention of organizations and funding agencies to support those struggling with rare diseases. They hope to continue to develop support systems and interventions to improve their quality of life. There needs to be a plan, there needs to be support, there needs to be funding, and then, of course, there needs to be precise execution. 350 million people is an unforgettable number, and every single one of their lives matter.
