According to a new study, people who suffer from rare disease are more prone to suffer from levels of anxiety, depression, pain and fatigue.
The findings are proof that special needs for rare disease patients are not being adhered to and that more services, like psychological support groups, need to be available. Bogart, Oregon State University has been focused on psychological implications of disability and recognize that an intervention needs to be made.
Over 350 million people suffer from at least one rare disease world wide. In addition, there are 7,000 diseases that are known as rare because of the tiny percentage of people they affect.
Each disease is different but one thing they share in common is that all of their hosts share the same characteristics and experiences. This includes minimal information and never ending diagnosis times that result in high anxiety and stress. This is why support groups are needed.
During the same study, over 1,200 U.S. residents suffering from rare diseases were interviewed with a long questionnaire about their general lifestyle. Overall, the group made up of 232 rare diseases that included ataxia, Bell’s palsy, Ehlers Danlos syndrome, mast cell disorders and narcolepsy. The craziest thing to note was that most of them waited an average of nine years before getting a final diagnosis.
When compared to healthy U.S. residents, rare disease sufferers experience anxiety worse than 75% of the population.
A great way to address this poor quality of life is by providing more psychological support groups, conferences and funding for these support groups.
“Some people with rare diseases may never meet another person with that disease,” Bogart said to the Hindustan Times. “That can be very isolating. Conferences are one way to bring people with similar experiences together to share. It helps them feel connected, normalised and validated.”
If you have a rare disease, you don’t have to go at it alone. You could seek a better quality of life with help from a mental health professional.