... “Understanding and managing scleroderma.” Scleroderma Foundation. Stay active. The disease is associated with … 2. His current research focus on developing, validating, and refining outcome measures in rheumatic diseases and designing controlled trials. Self Management of Scleroderma These talks cover a variety of coping, self management, wound care, advocacy and more The talks on this page are listed by most recent first... How … These measures help manage Raynaud’s phenomenon. Jane Brandenstein, PT, and Janet Poole, PhD, OTR/L, A short guide for hand and face stretches. More information is available at www.med.umich.edu/scleroderma. Make a fist emphasizing flexion (bending) of the MCP joints. Scleroderma patients, to resolve problematic gastrointestinal symptoms such as severe gas, … … She has designed hand and face exercise programs, developed self-management programs and collaborated with people with scleroderma in finding solutions to challenges in performing daily tasks. Scleroderma is a rare chronic disease. He holds the Frederick G.L. Because scleroderma can have many symptoms, a combination of approaches is often needed to treat and manage the disease effectively. Dr. Khanna has published over 300 peer-reviewed articles and book chapters. Here you can find advice on how to cope with different symptoms … The self-management program included 15 modules on topics such as coping and body image, exercise, self-advocacy, and pain management. Pedro Cuencas is a Content Specialist that develops e-learning solutions for health professionals, coaches, authors, public speakers, and entrepreneurs. Self-care: 10 ways to relieve discomfort from scleroderma. Conclusion: When faced with significant challenges while coping with scleroderma, patients develop strategies to manage better and improve their quality of life. Use this printout to identify an activity, and track goals and frequencies. What happens in the hands and arms in persons with scleroderma. Last accessed February 2015. Advertisement. The SPIN-SELF program utilizes social modelling through educational videos of scleroderma patients who describe their own challenges and what they have done to cope with living with scleroderma, as well as videos of patients and health professionals who teach key self-management … They can work their way to the surface and … If necessary, the heel of one hand may have … There are few evidence-based guidelines for the treatment of scleroderma, and its wide range of potential complications means many different medicines can be used in treatment. Jennifer Serrano, RN is a Clinical Research Coordinator with the Scleroderma Program at the University of Michigan. Scleroderma is a rare chronic disease. The most common downloaded resources were the Raynaud's travel kit, my scleroderma module, instructions for the paraffin wax treatment, quick medication review, managing ulcers, developing a support system, exercise log, and self… The objective of this study was to assess the validity and internal consistency reliability of the Self … To help them cope, … 3. The thumb pushes against the joint while the index and middle fingers apply counter pressure to attempt to straighten the joint. Jennifer lead the TOSS study within the University of Michigan and also supported the study as the project manager. Debbie’s nursing practice has been focused on the scleroderma … At different points in time, patients might … Gentle, regular exercise – will help keep your joints moving, will str… Stretching for muscles/skin for people with scleroderma. The second point of pressure is the pad of the third finger on the palm side of the contracted finger below the PIP joint. The third point of pressure is the thumb against the back of the contracted PIP joint. Jennifer has spent 4 years working specifically with the scleroderma population with a focus on patient support and providing tools to help the newly diagnosed navigate their disease. Managing a chronic disease involves lifelong learning and one's “basket” should NEVER be complete. … Often, persons with scleroderma do not know other people with the disease and may live in a state where there is no chapter of the Scleroderma Foundation or in a community where there are no support groups available. 18 talking about this. Dr. Poole has worked with people with scleroderma for over 20 years and is interested in the effects of scleroderma on hand function and tasks of daily living including self-care, parenting and employment. Diagnosis. Self Management Strategies and Scleroderma Deborah McCloskey, RN (2010) About Our Videos Primarily these videos were talks given by Physicians, Researchers, and other experts in their fields before live audiences, usually in auditoriums, conference rooms, ballrooms, or classrooms. After a thorough physical exam, your doctor may suggest blood tests to check for elevated levels of certain antibodies produced by the immune system. Dr. Khanna also serves as a reviewer for several professional journals, society committees and training programs, and grant applications and has published in Lancet and JAMA. Exercise keeps your body flexible, improves circulation and relieves stiffness. Here you can find advice on how to cope with different symptoms and what you can do yourself to help. What is Scleroderma - Self Manage Scleroderma with knowledge, tips & tools Today at 10:12 AM Scleroderma patients, to resolve problematic gastrointestinal sympto ... ms such as … Adobe Acrobat is required for use. The symptoms of scleroderma can affect your quality of life, but there are many things that can be done to manage them. Avoid hot baths and showers and exposure to strong soaps and household chemicals, which can irritate and further dry out your skin. He received the 2011 Doctor of the Year award from the Scleroderma Foundation and the prestigious 2015 Henry Kunkel Young Investigator Award from the American College of Rheumatology . She presents routinely at the Scleroderma Foundation Annual Conference for patients and remains inspired by the patients, their families and the physicians and health care providers who treat people with scleroderma. Learn about scleroderma – knowing as much as possible about your condition means that you can make informed decisions about your healthcare and play an active role in managing it. To encourage PIP extension or straightening, you can use the heel of one hand to press the fingers of the other hand flat down against a table, or place the hands and fingers flat against each other in a “prayer“ position. 3. To maintain thumb motion, try to bend the thumb to touch the base of the little finger. Don't … MANAGING SCLERODERMA. Range-of-motion exercises can help keep your skin and joints flexible. Validation of the Self-Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient-Centered Intervention Network Cohort Study Scores from the SEMCD scale are valid for … If necessary, the heel of one hand may have to press down on the dorsum (upper surface) of the proximal phalanges of the other hand. He is currently leading trials of abatacept (http://umich.edu/~asststdy/), riociguat, pirfenidone, and tociluzimab in scleroderma. … What is Scleroderma - Self Manage Scleroderma with knowledge, tips & tools January 26 at 10:12 AM Scleroderma patients, to resolve problematic gastrointestinal sympto ... ms such as … Take good care of dry or stiff skin by using lotion and sunscreen regularly. Taking Charge of Systemic Sclerosis (TOSS): An Internet Self-Management Program for Scleroderma. To stretch out the thumb away from the hand, place the pads of the thumb and index fingers of both hands together and push the thumbs away from the index fingers. Huetwell Professorship in Rheumatology. 2. Scleroderma is a rare disease. Learn more about how core body temperature, regular movement and … There is no cure for scleroderma, but treatment can help manage symptoms. The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of researchers, health care providers, and people living with scleroderma from around the world. They start under the skin and feel firm. Calcium deposits can develop if you injure your skin. Lifestyle changes – avoid exposure to cold temperatures, dress warmly and don’t smoke. The following Scleroderma Educational Program was developed by behavioral psychologist Dr. Jennifer Haythornthwaite and Johns Hopkins Scleroderma Center director Dr. Fredrick Wigley to help patients learn about the physiological and psychological effects of scleroderma… Scleroderma is a rare autoimmune disease, affecting about 300,000 Americans, but for those it affects it can be challenging to manage.. Primary Author and Speaker: Janet Poole Ways you can help yourself: Learn about scleroderma: scleroderma differs from person to person but can be treated effectively, discuss your treatment options with your … He is the Principal Investigator on National Institutes of Health and industry-sponsored clinical studies. … Dinesh Khanna, MD, MSc, is Professor of Medicine and Director, University of Michigan Scleroderma Program. Because scleroderma can take so many forms and affect so many different areas of the body, it can be difficult to diagnose. Make a fist emphasizing flexion (bending) of the MCP joints. As part of a research study, this web based self-management program was designed is to help you learn about scleroderma, manage your symptoms and learn strategies to help you advocate for yourself. You can take a number of steps to help manage your symptoms of scleroderma: 1. The Self-Manage Scleroderma Program is an online self-management program designed to help you learn about scleroderma, manage your symptoms, and learn strategies to help you advocate for yourself. Exercises for the hands Do each exercise 3 to 5 times and hold for 3 to 5 seconds. The following Scleroderma Educational Program was developed by behavioral psychologist Dr. Jennifer Haythornthwaite and Johns Hopkins Scleroderma Center director Dr. Fredrick Wigley to help patients learn about the physiological and psychological effects of scleroderma. Some patients with scleroderma develop calcinosis, small calcium deposits that can occur in the fingers. To help them cope, patients would benefit from easier access to supportive interventions, including tailored scleroderma self-management programs. As part of a research study, this web based self-management program was designed is to help you learn about scleroderma, manage your symptoms and learn strategies to help you advocate for yourself. Patients in the self-management … … The first point of pressure is the pad of the index finger on the palm side of the finger, just above the PIP joint. Tips for Scleroderma Self Management. Intensified B-cell depletion therapy (IBCDT) — administering immunosuppress ants to lower the number of antibody-producing immune B-cells — may be a promising strategy to help people with scleroderma manage … Jennifer recently graduated from the nursing program at Schoolcraft College and is working toward her long term goal of Nurse Practitioner focused on Rheumatology. This printout provides instructions for a paraffin wax treatment. There is no cure for scleroderma, but treatment can help manage symptoms. Knowledge and advocacy skills need to be continually woven, like a basket, into one's daily life. There are things you can do to manage your scleroderma including: 1. Search for a dermatologist by location Dr. Alan Tyndall, a professor and head of the Department of Rheumatology at University of Basel in Switzerland authored this article about tips for scleroderma self management for our friends at the Federation of European Scleroderma Associations (FESCA).. Protect your skin from getting injured. The Self-Manage Scleroderma Program is an online self-management program designed to help you learn about scleroderma, manage your symptoms, and learn strategies to help you … Pedro’s background in design, development, and digital marketing has given him the opportunity to take ideas from conception to fruition. Because symptoms vary greatly, treatment options are broad, and include a range of medications and self … Register today to gain skills and confidence to manage Systemic Sclerosis … Tips for Scleroderma Self Management. "Self Management Strategies and Scleroderma" Deborah McCloskey,RN Patient Education Forum UCONN (2010) About Ms. McCloskey: Debbie McCloskey is the Nurse Manger for the Clinical Research Center of the University of Medicine and Dentistry of New Jersey (UMDNJ). More information is available at pedrocuencas.com. Researchers randomized patients to receive either the scleroderma self-management program or the textbook. Conclusion: When faced with significant challenges while coping with scleroderma, patients develop strategies to manage better and improve their quality of life. Because symptoms vary greatly, treatment options are broad, and include a range of medications and self … No measure of self-efficacy has been validated for patients with systemic sclerosis (SSc; scleroderma). Dr. Alan Tyndall, a professor and head of the Department of Rheumatology at University of Basel in Switzerland authored this article about tips for scleroderma self management for our friends at the Federation of European Scleroderma … Overview Symptoms Causes Treatment Self-care. The symptoms of scleroderma can affect your quality of life, but there are many things that can be done to manage them. This web based self-management program was designed is to help you learn about scleroderma, manage your symptoms and learn strategies to help you advocate for yourself. This randomized controlled trial evaluated the effectiveness of an Internet self-management program for scleroderma. Another exercise for the PIP joint uses 3 points of pressure (see picture). What is Scleroderma and how can you take charge of this autoimmune … A quick guide to range-of-motion exercises for the hands. Instead, treatment is directed at controlling and managing the symptoms. His goal is to continue adapting to the ever-changing educational landscape and provide solutions that increase the quality of the lives they touch. Skin treatments: For localized scleroderma… No educational programs exist for people with this disease. Dr. Janet Poole is a Professor and Director of the Occupational Therapy Graduate Program in the School of Medicine at the University of New Mexico, Albuquerque, NM. Scleroderma can impact many important aspects of life, which makes it critical for you to have a reliable team of people to help manage challenges. As founder of Trusted Techniques, Pedro helps organizations and individuals leverage their knowledge, experience, and skills to produce online learning in the form of micro-courses to meet the growing demand for brevity, granularity, and variety. No educational programs exist for people with this disease. All chapters are in PDF format. Self care. There are few evidence-based guidelines for the treatment of scleroderma, and its wide range of potential complications means many different medicines can be used in treatment. Protect your skin. In 2011, Dr. Poole received the National Volunteer Award from the Scleroderma Foundation. Scleroderma can be difficult to diagnosis because it is an autoimmune disease and although there is no cure, there are steps that can be taken and lifestyle changes that help manage … Objective: Self-management programs for patients with chronic illnesses, including rheumatic diseases, seek to enhance self-efficacy for performing health management behaviors. This randomized controlled trial evaluated the effectiveness of an Internet self-management program for scleroderma.

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