Date: 06/21/2023

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As recently as 2020, over 475 million people worldwide live with a rare condition. Through the years, over 7,000 unique diseases have been discovered alongside their related symptoms, which has made for a diverse set of experiences. That said, many of the people who suffer from them have one thing in common: their medical diagnosis impacts their mental health negatively. A 2021 study on rare disease patients found that up to 42% showed signs of moderate to severe depression. Many health experts emphasize that poor mental health is complicated and caused by many factors. However, it has been observed that having a rare disease creates an environment in which mental disorders are plentiful. This article explores the relationship between rare diseases and mental health. 

The connection between rare diseases and mental health

Although most medical conditions come with their own challenges, rare diseases have distinctions that set them apart. The uncommon nature of these ailments usually means that less information is known about them. As a result, they may be more complex and take longer to treat. This becomes a roadblock that increases the likelihood of rare disease patients experiencing some daily challenges that, while surmountable, may color their lives. Usually, the diagnosis of a rare disease not only affects patients physically but seeps into other areas of their life as well. The nature of their condition can lead to a lack of much-needed psychological support. Case in point, statistics show that 7 out of 10 rare disease patients feel that their emotional support needs aren’t met. This leads to feelings of isolation and vulnerability. It can also cause immense stress and damage self-esteem. Furthermore, these sentiments are aggravated by the disease itself. For instance, Moebius syndrome is a rare medical condition that affects facial muscles, making it harder for patients to communicate. Those with Cushing’s disease, which only affects around 15 people per million, experience excess weight gain due to the overproduction of cortisol, leading to fatigue and irritability. These traits are just some examples, but they’re notable because they’re also some of the most common symptoms of mental health conditions. As shown, rare disease patients fall into a space that puts pressure on their mental well-being. They’re more likely to develop mental disorders because their diagnosis creates the ideal circumstances for these conditions to prosper. Ultimately, poor mental health is an unfortunate side effect of having a rare disease, but it also creates more challenges for patients to overcome on their path to recovery.

What are some efforts to address these struggles?

Alternative solutions

Since rare diseases can lead to mental health conditions, some treatments address their side effects instead in order to alleviate some symptoms. To illustrate, Ichthyosis can be acquired due to Hyperinsulinemia, a condition that promotes rapid weight gain. These symptoms can worsen a person’s mental health, so medications like GLP-1, which reduces insulin resistance and promotes weight loss simultaneously, can help. GLP-1 for weight loss works by curbing the appetite and can effectively reduce body weight by up to 15%. Weight has been closely associated with mental health, so having a treatment that can address this along with a side effect of a rare disease is significantly helpful. Such alternative treatments may not directly help with the rare condition, but they can help make the overall quality of life better.

Familial support

In most cases, care for rare disease patients begins at home, especially when the patient is young. Caregivers are tasked with providing assistance and encouragement. For example, the rare skin disease Blau syndrome, which is characterized by skin rashes, primarily affects children below four. A study found that 1 out of 4 children care deeply about physical appearance, which can affect their mental health. Most caregivers do their best to reaffirm that their value isn’t determined by physical appearance, uplifting their mental health and giving them strength to recover. That said, caregivers also need to be able to receive their own support so their own mental wellness is not burnout.

Community

Studies have proven that connection and community are critical for treating medical conditions and mental health, but those with rare diseases may find it hard to find fellow patients. Fortunately, social media serves as a helpful tool that connects rare disease patients all over the world. Here, they can easily access a community and create a supportive environment for one another. It also encourages collaboration, as advocacy groups can contact community members through these channels and offer the help they may need, ranging from emotional to financial, for treatments.

Written by Rae Johns Exclusively for FIRST

For more information, please read this research article.

Ichthyosis affects mental health in adults and children: A cross-sectional study

Published: January 29, 2020 DOI: https://doi.org/10.1016/j.jaad.2020.01.052

Qisi Sun, BS

Ivy Ren, BS

Theodore Zaki, MD

Kaitlin Maciejewski, MS

Keith Choate, MD, PhD