Rare diseases are defined as medical conditions that affect fewer than 200,000 individuals in the United States or fewer than one in 2,000 individuals in Europe. While each rare disease may only affect a small number of people, collectively, rare diseases affect an estimated 400 million people worldwide. Patients with rare diseases often face many challenges, including difficulty obtaining a diagnosis, lack of available treatments, and limited access to information and resources. However, one of the most significant challenges that rare disease patients face is loneliness.
Rare disease patients often feel isolated and disconnected from others because they are living with a condition that few people have ever heard of. They may feel like they are the only ones dealing with their particular symptoms or that no one understands what they are going through. This can be especially difficult for patients who are young or who have recently been diagnosed with a rare disease. They may feel like they are the only ones in their age group or social circle who are dealing with a serious health issue.
Also because these conditions affect so few people, there are often limited resources available to help patients and their families. Many rare disease patients struggle to find medical professionals who are knowledgeable about their condition, which can make it difficult to obtain an accurate diagnosis or appropriate treatment. In addition, there may be few support groups or patient organizations dedicated to rare diseases, leaving patients feeling like they are on their own.
The financial burden of living with a rare disease can also contribute to feelings of loneliness. Many rare disease treatments are expensive and may not be covered by insurance. Patients and their families may struggle to afford medical bills, and this can lead to financial stress and strain on relationships. As a result, rare disease patients may feel like they are burdening their loved ones and may withdraw from social situations as a result. Living with a rare disease can also be stressful, and patients often experience feelings of anxiety, depression, or hopelessness. They struggle to maintain relationships with friends and family members, and this lead to further feelings of isolation and loneliness.
Addressing these challenges will require a multi-faceted approach that involves improving medical education and awareness of rare diseases, increasing funding for research and treatment, and providing more support and resources to rare disease patients and their families. This is why we are working on Friska Labs, a patient-centric platform that connect patients, caregivers and advocacy groups together and crowdfunding opportunities to fund potential cures.
To be continued...