Quality of Life Issues

How Does Sarcoidosis Affect Quality of Life?

Sarcoidosis is a very complex disease which makes quality of life issues a huge factor 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 and doctors alike 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 failure to diagnos or a misdiagnosis.  There is 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.

The Side Effects of Sarcoidosis Treatment

In the treatment of sarcoidosis, 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. If sarcoidosis patients are prescribed immunosuppressants instead, they may experience gastrointestinal upset, liver toxicity, kidney issues, and an increased risk of infections. Other treatments can lead to eye problems, liver issues, and skin rashes among a host of other side effects. Unfortunately, many sarcoidosis patients are faced with the difficult decision of whether to endure the side effects of the medication, or the symptoms of the disease.

How Can I Improve My Quality of Life with Sarcoidosis?

Improving your quality of life with sarcoidosis involves managing your condition effectively with the help of your medical team and taking steps to support your overall well-being. Ensure you take the medications prescribed to you by your providers to manage your symptoms and keep an open line of communication with your doctor regarding symptoms and side effects. You can also keep track of sarcoidosis flare-ups to better pinpoint and manage your triggers. A lifestyle adjustment may be necessary, including a transition to a healthy and balanced diet, regular exercise, and adequate rest. In addition to prescribed medications, sarcoidosis patients may find additional benefit in complementary medicine options. 

It can also be helpful for sarcoidosis patients to seek out 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.

Sarcoidosis Resources

There are dozens of resources to further address quality of life issues in sarcoidosis patients. In addition to patient support groups, there are several articles and dissertations that provide in depth information on sarcoidosis diagnosis and treatment. These include:

While the quality of life for sarcoidosis patients, especially those who experience clinical symptoms, is impaired, the combination of symptom treatment, the focus on personal well-being, and support groups can significantly improve life for those with sarcoidosis.

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