QOL with Scleroderma
The quality of life (QOL) is affected any time something prevents us from maintaining our normal routine or from doing something that we enjoy. A broken arm will affect your QOL on a temporary basis, but a chronic illness may it affect it indefinitely.
A chronic illness such as scleroderma affects our lives in so many ways. Going to lunch with friends or simply taking a walk around the neighborhood become a chore. The secret is to find alternatives.
What have you not done in your life that could make you just as happy as before, but with less effort? For example, rather than going out to lunch, have your friends bring you lunch. Have a picnic in the yard so you don't have to clean up the house.
Go for a stroll rather than a walk. Stop and smell the roses or watch the hummingbirds pick bugs out of the air. It's amazing how some of the simpliest things can add a sense of quality to your life.
The First Real Proof That Your Outlook Affects Longevity. Being optimistic can help you fend off stress, eat better and be more physically active, all of which can lower your risk of chronic illnesses. Time Healthland, 12/13/2016.
Health-related quality of life (HRQoL) in systemic sclerosis (SSc) before and after autologous haematopoietic stem cell transplant (AHSCT) - a systematic review. AHSCT in severe SSc patients is associated with significant and durable improvement in physical HRQoL. PubMed, Rheumatology (Oxford), 08/27/2019. (Also see Stem Cell Transplantation)
Gastrointestinal manifestations on impaired quality of life in systemic sclerosis (SSc). Gastrointestinal involvement is frequent in SSc, with reflux or indigestion as the most common symptom. PubMed, J Dig Dis, 2019 May;20(5):256-261. (Also see Gastrointestinal Involvement)
Health–related quality of life (HRQoL) in systemic sclerosis (SSc) compared with other rheumatic diseases: a cross–sectional study. SSc patients report poorer HRQoL than patients with rheumatoid arthritis or systemic lupus erythematosus and the extent of skin involvement is associated with poorer HRQoL in SSc patients. PubMed, Arthritis Res Ther, 2019 Feb 15;21(1):61.
The impact of malnutrition on quality of life in patients with systemic sclerosis. Standardized nutritional screening should routinely be conducted to identify the risk of malnutrition in order to enable an intervention with multimodal treatment. PubMed, Eur J Clin Nutr, 03/08/2018. (Also see Diet and Systemic Scleroderma)
Clinical characteristics and factors associated with disability and impaired quality of life in children with juvenile systemic sclerosis. Multi–organ manifestations were common, and functional disability was greater than other childhood rheumatic diseases. Gastrointestinal involvement had the greatest impact on quality of life. PubMed, Arthritis Care Res (Hoboken), 02/18/2018.
Work productivity in systemic sclerosis (SSc), its economic burden and association with health–related quality of life (HRQoL). SSc is associated with considerable unemployment and reduced productivity, which in turn is associated with a substantial economic burden and poor HRQoL. PubMed, Rheumatology (Oxford), 2018 Jan 1;57(1):73-83.
Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma (SSc) Patient–centered Intervention Network (SPIN) Cohort study. Appearance concerns were common in SSc and women were substantially more likely than men to have appearance concerns. PubMed, Clin Exp Rheumatol, 08/01/2016.
Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease. PubMed, PLoS One. 2016 Mar 23;11(3):e0152419. (Also see Coping with Scleroderma)
Caregiving by Dee Dee Hunt When living with a chronic illness, we encounter "angels." They take different forms: Doctors, nurses, family, friends and caregivers.
Cindy Fuchs-Morrissey: Mother of a Progressive Systemic Sclerosis Child Some days she feels like a very stiff old lady.
Marina: Diffuse Scleroderma At forty-five, I am single, have three well-adjusted adult children, as well as a conviction that despite the low quality of life SD gives me, it has also brought me closer to my faith…
Patty S.: Localized Scleroderma, Pulmonary Hypertension and Sjögren's There's no more putting off for tomorrow in my world.
In Loving Memory of Lorraine Wempner, a donation to tackle scleroderma has been made by Paul Wempner. Posted 11/13/2019. (Also see: ISN News)
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