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Patients with Sjögren's reported visiting almost five health care professionals per year
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According to a recent survey conducted by Harris Poll on behalf of the Sjögren’s Syndrome Foundation, patients with Sjögren’s syndrome reported visiting almost five health care professionals per year.
“Sjögren’s is often undiagnosed or misdiagnosed because disease symptoms frequently overlap or mimic those of menopause, allergies or medical conditions, such as lupus, rheumatoid arthritis, fibromyalgia and chronic fatigue syndrome,” Nancy Carteron, MD, clinical associate professor of medicine at the University of California, San Francisco, and chair of Sjögren’s Syndrome Foundation (SSF)’s Medical and Scientific Advisory Board, said in a press release. “Health care providers sometimes treat each symptom individually and do not recognize that a systemic disease is present.”
The Living with Sjögren’s survey was conducted between May and June, 2016 in the United States on 2,962 adults who were diagnosed with Sjögren’s syndrome, according to the release. Respondents reported having an average of four other diseases, which included gastroesophageal reflux disease, Raynaud’s, neuropathy, sinusitis, hypertension and irritable bowel syndrome. Respondents noted they visited a mean of 4.6 health care professionals per year to help manage their disease and used a mean of 8.8 medications to treat their Sjögren’s symptoms.
Their symptoms included dry eyes (54%), fatigue (54%) and dry mouth (50%). In addition, 71% reported Sjögren’s gets in the way of daily activities; 49% reported the disease has a negative impact on their hobbies, social activities and extracurricular activities; 79% reported the disease led them to make at least one day-to-day change around the house, which included doing less housework (74%) or hiring additional providers to help with cleaning or child care (38%). Investigators found 54% of respondents reported they have made at least one change at work, which included stopping entirely (28%), reducing their schedule (28%) or changing to a less-demanding career (27%); 74% reported the disease added a significant emotional burden, which included relationship with friends and family (63%), sex life (59%), relationship with spouse (55%) and caring for children (19%); and 96% reported they wish there were additional therapies available to treat symptoms.
“If you break a bone and wear a cast, others can see your injury and understand your limitations,” Steven Taylor, chief executive officer of SSF, said in the release. “But with Sjögren’s, your symptoms are not clearly visible, so not only do you have to put up with challenging, often painful and sometimes debilitating conditions every day, but you may face disbelief from family, friends, co-workers and even doctors, who do not understand what is wrong with you.”
Reference:
www.sjogrens.org/home/about-sjogrens/livingwithsjogrenssurvey