Helping People Diagnosed with a Rare Disease Overcome Mental Health Challenges
January 31, 2023 - Written By: Jessica Wong
Mental health challenges affect people of all ages, including children and teenagers. According to the Centers for Disease Control and Prevention (CDC), more than one-third of high school students suffered from poor mental health during the coronavirus pandemic. Figures from Johns Hopkins paint an even more dramatic picture, with over 50% of teens saying the pandemic caused problems for them.
One group that has been affected harder than most are young people living with complex and rare diseases. For people living with rare conditions, every day is a challenge, whether they are facing a pandemic or not. On the eve of Rare Disease Awareness Month and throughout the month of February itself, it is time to take a closer look at the connection between rare diseases and mental health. For many rare disease patients, improving their mental health can be instrumental in adapting to their version of normal life.
Mental Health and Rare Disease
The coronavirus pandemic has changed how our society talks about mental health. Just a few years ago, the subject used to be somewhat taboo. Prior to the pandemic, those who admitted to suffering from mental health challenges had to deal with stigmatization and other consequences. Now that more people have opened up about their personal mental health struggles, stigmas are breaking down, and mental health challenges are becoming a topic of daily conversation.
Rare diseases have not yet become the subject of everyday discourse; however, one in 20 people worldwide suffer from a rare disease. In the United States, a disease is considered to be rare if less than 200,000 people are affected by it. There are currently more than 7,000 rare diseases identified.
The Rare Advocacy Movement (RAM) is working to shine a light on the people living with rare diseases and their challenges. Maintaining or regaining excellent mental health can be challenging for people living with a rare disease. For a start, rare disease patients are more likely to experience depression and anxiety. They are also more prone to experiencing feelings of isolation or abandonment, both when navigating the health care system and attempting to integrate into normal daily life.
Why Children and Young People Are Especially Affected
Nearly one in three rare disease patients are children. However, approximately 70% of rare diseases exclusively develop during childhood. That means, even though 70% of people living with a rare disease are 18 years of age or older, most have been living with their rare condition since childhood.
For some, living with a rare disease equates to frequent hospital trips and stays, countless tests, and a long diagnostic journey. Throughout this time, few of the young patients and their parents have access to a fully-developed and informed support system. Several rarely know others in the same situation because the diseases are less well-known and prevalent, making it difficult to create meaningful connections with other people. Isolation is a frequent consequence.
But it is not all bad news. The public conversation around rare diseases is growing. Plus, advances in personalized medicine have made it possible for doctors to find solutions for several rare diseases. Taking advantage of unintended side effects and developing stronger drugs based on these initial findings has given hope to so many.
How Performing Arts Can Help
On the mental health side, some of the most promising developments involve fine arts. For centuries, art has allowed people to express themselves creatively and allow others to share a piece of their world. Studies have now confirmed that exposure to fine arts can foster a broader sense of well-being in a person and create a bridge into society.
Research on patients on the autism spectrum found that fostering a love of arts improved participants’ overall quality of life. However, budget cuts have made it harder for children and young people to explore their connection to dance, music, and other fine arts. One non-profit organization is working to turn the tide on this development and support the rare disease community in the process.
VisionsForConfidence (V4C) was founded by two highly accomplished teenage artists in dance and music, who wanted to share their love for performing arts with the wider community. The team has worked with children with disabilities already and is now expanding its impact to the rare disease community.
Madeleine Chen, a co-founder of V4C, said: “Exposure to the performing arts provides important skills development and social opportunities for children with a variety of disabilities. V4C functions as a ‘facilitator’ of the performing arts – those providing and maintaining the opportunities – to realign the performing arts in a way that can best benefit children with disabilities.”
Providing opportunities to socialize can be an important step toward helping children with rare diseases and their families overcome feelings of isolation. Through opportunities like accessible dance classes and body coordination movement, as well as other arts-related events, V4C is striving to show families of children with rare diseases that they are not alone.
Making a Long-Term Impact
Several rare diseases are progressive, putting patients in a position where they constantly have to readjust to new life circumstances. Adapting to changing needs can be challenging for anyone, but even more so for people with complex health requirements.
Having to adjust to physical and cognitive limitations and growing challenges is often directly correlated with declining mental health. The founders of V4C believe that performing arts training can help rebuild some of that lost confidence and show ways in which young people with rare diseases are able to thrive and lead fulfilling lives.
With over 360 million members globally, RAM knows the rare disease community because the people of RAM are the rare disease community. Spreading the benefits of performing arts to the community whilst raising global awareness of the need for more research and mental health support can make a lasting difference to young children and teens diagnosed with a rare disease and their families.
About the Author
is a digital expert and executive with over 20 years of success helping corporations and startups achieve digital transformation and develop robust data-centric digital campaigns.
As a digital expert, Jessica was invited to publish thought leadership articles on Forbes as an official member of the Forbes Communications Council. She also provides business advice to millions of Entrepreneur.com readers. She was named the Most Influential CEO by CEO Monthly magazine.
The Women in IT Awards have named Jessica a finalist for the Digital Leader of the Year. MARsum USA has recognized her as one of the Top 100 Marketing & Advertising Leaders. The Global100 Awards have also named Jessica CEO of the Year.
Through her extensive digital experience in pharmaceutical, healthcare and biotechnological, Jessica has been named as the authorized digital transformation advisor for the Rare Advocacy Movement (RAM), the first community-based decentralized autonomous organization dedicated to the best interests of people diagnosed with life altering rare diseases and their families.