Fatigue in Systemic Sclerosis: An Unwelcome Symptom. The fatigue that accompanies scleroderma can quite often be overlooked, with the initial management of the disease focussing on the more important, life threatening skin and organ fibrosis progression. Scleroderma News, 04/04/2016. (Also see Fatigue)
Effect of endothelin–1 receptor antagonists (ETRAs) on skin fibrosis in scleroderma (SSc) patients from the EUSTAR database. ETRAs have well–proven clinical effects in the prevention of digital ulcers and in the treatment of pulmonary hypertension, but there is no evidence from clinical studies to support its use as an anti–fibrotic therapy. Journal of Scleroderma and Related Disorders, 03/30/2016. (Also see Skin Fibrosis and Endothelin and Systemic Scleroderma)
Mycophenolate mofetil (MMF) is an effective and safe option for the management of systemic sclerosis–associated interstitial lung disease (SSc–ILD). In patients with SSc–ILD with declining pulmonary function, MMF therapy was associated with stability for up to 36 months. PubMed, Clin Exp Rheumatol, 03/24/2016. (Also see Pulmonary Fibrosis Treatments: Cellcept)
Thrombotic complications after radial arterial line placement in systemic sclerosis: A case series. Radial arterial line placement may trigger critical ischemic events in scleroderma patients which suggests that placement of radial lines needs to be thoughtfully weighed prior to insertion. Seminars in Arthritis and Rheumatism,04/02/2016. (Also see Cardiac (Heart) Involvement)
N–terminal pro Brain Natriuretic Peptide as predictor of outcome in scleroderma renal crisis. N–TproBNP peptide may be a useful biomarker in risk–stratification of renal outcome in SRC, selectively identifying patients likely to require renal replacement therapy. PubMed, Clin Exp Rheumatol, 04/07/2016. (Also see Kidney (Renal) Involvement)
More complete genetic map of scleroderma disease makes more effective medications possible. The study has determined possible genetic associations of the different subtypes of the disease, especially the more aggressive ones. Science Daily, 04/08/2016. (Also see Causes of Scleroderma: Genetics)
Survival protection by bodyweight in isolated scleroderma–related pulmonary artery hypertension. The results suggest body mass index decline should be contrasted, lung diffusion is useful for screening and with stroke volume index and mixed venous saturation for assessing prognosis and treatment. PubMed, Intern Emerg Med, 04/06/2016. (Also see Pulmonary Hypertension Prognosis)
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 Quality of Life with Scleroderma and Coping with Scleroderma)
Prediction of improvement in skin fibrosis in diffuse cutaneous systemic sclerosis: a EUSTAR analysis. Patients with advanced skin fibrosis at baseline and absence of tendon friction rubs are more likely to regress in the next year than patients with milder skin fibrosis. PubMed, Ann Rheum Dis, 03/25/2016. (Also see Skin Fibrosis)
Lung Transplant Outcomes in Systemic Sclerosis (SSc) with Significant Esophageal Dysfunction: A Comprehensive Single Center Experience. Relative to other lung transplant indications, our SSc group experienced comparable survival, despite the high prevalence of severe esophageal dysfunction. PubMed, Ann Am Thorac Soc, 04/14/2016. (Also see Lung Transplants)
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.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.