Many people within the rare disease community share a common experience: feeling isolated or misunderstood because of your condition. In some cases, such as conditions causing chronic pain or fatigue, it can be difficult to maintain a social life or a professional career. In others, your doctors – or even the medical field as a whole – might not understand the specifics of your rare disease. But as an estimated 1 in 10 American citizens has a rare disease, it is time to combat these difficulties and providing an environment with more support. But what type of support is most helpful? A new study published in Health Psychology surveyed patients to come up with a conclusive answer.

What is a Rare Disease?

In the United States, a rare disease is defined as a condition affecting 200,000 people (or fewer) each year. This definition varies in other countries, usually based on population. For example, Rare Disease UK notes that a rare disease in the European Union (EU) affects less than 1 in every 2,000 citizens. In a report by the Canadian Agency for Drugs and Technologies in Health (CADTH), a rare disease is defined as affecting:

• 50,000 people or less in Japan
• Under 20,000 people in South Korea
• Less than 2,000 people in Australia
• Fewer than 1 in 10,000 people in Taiwan
• Less than 5 in 10,000 people in Canada

Altogether, over 7,000 separate rare diseases exist. Some, especially those with genetic underpinnings, still have yet to be discovered. A majority of these conditions do not yet have approved treatment options. More so, it often takes years to diagnose a rare disease; many patients see upwards of 5 doctors and wait 7 years for a diagnosis.

Additionally, other struggles exist for those in the rare disease community. For example, Rare Disease UK explains that around 66% of all patients do not feel supported enough by the healthcare system. Patients also struggle with feeling isolated, depressed, and anxious. As a result, it is crucial not only to amplify patient voices, but to raise awareness and education around these conditions. As a society, we must commit to improving support systems for patients with rare disease.

New Research

In the recently published study, researchers explore how different support avenues increase quality of life (QOL) and happiness for adult patients with rare diseases. 1,203 American patients, with a total of 232 conditions, participated. Overall, the study explored four forms of support:

• Tangible, or practical assistance with daily tasks.
• Companionship, or participating in fun activities with others.
• Emotional, or feeling validated, understood, and heard.
• Informational, or advice and education.

During the study, patients rated their stress levels, QOL, and impact of different support avenues. Ultimately, tangible and informational support were not linked to QOL. Instead, both companionship and emotional support improved happiness and quality of life; this was even true in cases of patient stress. However, researchers determined that companionship support is less studied – and sometimes less available – than other forms.

How to Provide Companionship and Emotional Support to the Rare Disease Community

The first way to provide companionship and emotional support to members of the rare disease community is by connecting patients to patient advocacy groups. Being able to communicate with others who have the same condition can feel uplifting. Beyond that, these advocacy groups also offer avenues of communication and support for patients with a lesser-known rare disease. From Global Genes’ conferences, to some of the many advocacy groups Patient Worthy partners with, patients can find a community and feel connected.

Next, patients can engage in online support groups or chats. For example, the Patient Worthy team enjoys joining in #PatientChat on Twitter. This chat, which occurs bi-weekly at 10am PT (1pm ET), invites patients to discuss their journeys with others. Chats vary in topic, but discuss treatment options, research, communication, and how to raise rare disease awareness between friends and family. Additionally, engaging on these platforms can provide insight into potential treatment options or research participation opportunities that can be done in a virtual setting.

Read the source article here.