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.
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)
A review on quality of life in systemic sclerosis (SSc). It is important for SSc patients to have an interdisciplinary approach towards their cognitive representations of the disease and what they value most. PubMed, Autoimmunity Reviews, 07/29/2015.
The Effects of Respiratory Muscle Weakness and Pulmonary Involvement on Functional Status, Fatigue and Health Related Quality of Life (HRQoL) in Patients With Systemic Sclerosis. A comprehensive pulmonary rehabilitation program including respiratory muscle exercises should be designed to improve functional status, HRQoL, and fatigue in patients with systemic sclerosis. Archives of Rheumatology, November 2014.
Impact of hand face disabilities on global disability and quality of life (QoL) in systemic sclerosis (SSc) patients. Diffuse SSc patients present higher global and local disability, and lower Health Related QoL in the Summary Physical Index than Limited SSc patients. PubMed, Clin Exp Rheumatol, 2014 May 21.
Quality of life as measured by the short-form 36 (SF-36) questionnaire in patients with early systemic sclerosis(eSSc) and undifferentiated connective tissue disease(UCTD). Many eSSc or UCTD patients perceive they have an impaired quality of life in both physical and mental domains. PubMed, Health Qual Life Outcomes, 2013 Feb 25;11(1):23.
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.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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