Sacroidosis Quality of Life
October 12, 2025•535 words
Sarcoidosis patients face many complex challenges. A high percentage of patients experience a difficult diagnosis or a misdiagnosis. Reports include the case of a patient who presented symptoms at age 12, but did not receive a proper diagnosis of sarcoidosis until age 40, while other patients have received misdiagnosis of cancer and have been accused of imagining their symptoms and are referred to psychiatrists.
In the treatment of their disease, many patients are prescribed prednisone. Prednisone has many adverse side effects which include: weight gain, diabetes, high blood pressure, mood swings, depression, difficulty sleeping at night, heartburn, acne, thinning of the skin and bones, cataracts, glaucoma, and adrenal gland insufficiency.
Patients struggle with the side effects as these adversely affect their quality of life, leaving many patients faced with the difficult decision of whether to endure the side effects of the medication or the symptoms of the disease.
One of the most profound quality of life issue is fatigue. A major percentage of sarcoidosis patients experience severe fatigue, which impairs their ability to function at their normal levels. Another quality of life issue that can be devastating is that many patients look completely healthy to outsiders – the symptoms may not be easily observed by others. Thus, any times when patients complain of their symptoms to family, friends and colleagues, they are not taken seriously, or are accused of making up their symptoms.
Others also do not understand why patients are not able to perform work or participate in social activities as they previously did prior to their illness as they “look fine”. It is essential for patients to be empowered with all the information they can about their disease to help educate others and improve their own care options.
In addition, informed, engaged patients are CRITICAL to breakthroughs in disease research. This can take place in numerous ways such as online resources and communities, support groups, and conferences and webinars to help patients stay updated on current options as well as understanding the fundamental value they bring to clinical research.
As in many other rare disease arenas, specifically involving patients through education and connections to all stakeholders in the sarcoidosis space will help lead to key research findings.
Currently, no general agreement exists on the definition of fatigue. Fatigue can be seen and measured as a uni- or multidimensional concept. The multidimensional concept of fatigue can be
divided into at least two categories: physical and mental or passive and active fatigue.
Several studies have reported that neither lung function tests nor chest radiographs correlate with nonspecific health complaints, including fatigue or QoL. Some sarcoidosis patients are debilitated by the symptoms of their disease and are unable to work; others are underemployed and incapable of reaching their full potential due to health-related issues [21]. Individuals affected by the disease usually appear completely healthy, so their symptoms are often not taken seriously by family, friends and healthcare professionals. Consequently, some patients lose their desire and ability to effectively socialise with others, causing relationships and family dynamics to ultimately suffer. These combined factors have an impact on an individual's economic status, interpersonal relationships and family dynamics, and increase their stress levels, and induce depression in patients.