Sarcoidosis is a very complex disease which makes quality of life issues a huge factor for patients. There are numerous factors which adversely impact the quality of life for patients. Not only are patients required to contend with the complications and symptoms of the disease, but many are faced with societal perceptions because many patients do not necessarily “look sick” and their family and friends may question the validity of their disease, wondering why they are no longer able to function, perform or engage in work or play; or participate in everyday activities. Some patients experience a certain level of stress and anxiety as there are many unknowns associated with the disease. Patients have no understanding of the origin of sarcoidosis; its cause has been elusive, there is no known cure, and patients are often treated with medications for which there are numerous adverse and long term side effects. A major and important issue for many patients is an unexplainable overwhelming fatigue which impacts every aspect of their lives. Quality of life issues can impact relationships with spouses, significant others, family, friends, colleagues; as well as affect the patient’s self-esteem. The magnitude of quality of life issues can be totally devastating which can result in feelings of bewilderment, fear, and depression for the patient.
A high percentage of patients experience a difficult diagnosis or a misdiagnosis. There was a report of a patient who presented symptoms at the age of twelve years old, but did not receive a proper diagnosis of sarcoidosis until the age of 40. Other patients have reported having received a misdiagnosis of cancer or have been accused of imagining their symptoms and referred to psychiatrists.
In the treatment of the disease, many patients are prescribed prednisone. Prednisone has many adverse side-effects, including weight gain, diabetes, high blood pressure, mood swings, depression, difficulty sleeping, heartburn, acne, thinning of the skin and bones, cataracts, glaucoma, and adrenal gland insufficiency. Patients struggle with the side effects of weight gain, mood swings, and depression as these symptoms adversely affect their quality of life. Many patients are faced with the difficult decision of whether to endure the side effects of the medication, or the symptoms of the disease.
Fatigue is a huge quality of life issue. A major percentage of sarcoidosis patients experience severe fatigue which impairs their ability to function at their normal level. Another quality of life issue that some patients experience is that they look completely healthy. Many 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. Also, others 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 helpful for sarcoidosis patients to have a network and support group to provide a forum for the exchange of ideas, experiences, and expertise. Many patient organizations host websites, podcasts, educational conferences, video posts, and/or newsletters that provide valuable information to enable patients to understand and manage the symptoms of the disease.
Some sarcoidosis organizations have implemented public awareness programs which increase the probability of better diagnosis by physicians. Other organizations engage in research initiatives to identify the cause and cure for the disease, and to improve diagnosis, prevention and treatment. Some groups are involved in advocacy efforts to foster support for sarcoidosis initiatives on the local, state, and federal levels of government.
Below are resources to further address quality of life issues, and to help you to identify patient support groups:
There are several organizations providing information about Sarcoidosis Support groups in the United States and internationally.
The American Lung Association can help people with sarcoidosis find support groups through their Better Breathers Club meeting in your community. The Lung Association recommends patients and caregivers join the Living with Lung Disease Support Community to connect with others facing this disease.
The Lung Helpline (1-800-LUNGUSA) is open seven days a week and is staffed by experienced registered nurses, respiratory therapists and certified tobacco treatment specialists. They can provide you with the support and the answers patients are looking for.
Check these sites to find nearby support groups:Stop Sarcoidosis WASOG
NORD (National Organization for Rare Diseases) provides the programs and services that may support patients. This information can help patients connect with others living with rare diseases and to facilitate access to additional resources.