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Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community

Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community

Embodying the issues encountered by all patients with genetic diseases are patients with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that creates structural defects in skin, joints, blood vessels, and other organs. Symptoms of EDS often include fatigue, weakness, damaged skin, joint dislocations, and chronic pain [6]. With no cures or significant treatments for genetic disorders, patients focus on mitigating pain and improving their quality of life [7].

Sadaf Ashtari, Adam Taylor

JMIR Form Res 2023;7:e41610

The Building Healthy Eating and Self-Esteem Together for University Students Mobile App to Treat Eating Disorders: User-Centered Research Design and Feasibility Study

The Building Healthy Eating and Self-Esteem Together for University Students Mobile App to Treat Eating Disorders: User-Centered Research Design and Feasibility Study

Eating disorders (EDs) are a major public health concern associated with substantial psychiatric and medical morbidity, with one of the highest mortality rates of all mental illnesses [1,2]. Given the negative personal and public health impact associated with EDs, it is important to identify and treat them early to prevent long-term health problems. In community-based samples, EDs occur in 13% to 18% of young women and 3% to 5% of young men [3,4].

Kelsie T Forbush, Kara A Christensen Pacella, Marianna L Thomeczek, Sara R Gould, Danielle A N Chapa, Brianne N Richson, Victoria L Perko, Joseph Ayres, Yiyang Chen, Sonakshi Negi

JMIR Form Res 2023;7:e43504

The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups

The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups

In this study, our focus was on Ehlers-Danlos syndrome (EDS), a genetic disorder. It is an inherited connective tissue disorder that causes problems in the skin, blood vessels, bones, and other organs. Patients with EDS have to cope with complications such as joint hypermobility or dislocations and damaged skin for their entire life [2]. Similar to other rare diseases, a lack of scientific knowledge and information regarding EDS causes delays in diagnosis.

Sadaf Ashtari, Adam Daniel Taylor

J Med Internet Res 2022;24(8):e39172