Monday, March 15, 2010

A Must-Read List for Coping With Sjogren's Syndrome

I was browsing the Sjogren's Syndrome Foundation's website, and noticed something new - a list of 100+ brief but very useful tips for day-to-day living with Sjogren's. Here's a sampling, but go read the list in it's entirety, here. It's entitled Survival Tips:

Dry Skin Survival Tips:
  • Take short, warm baths or showers to help with dry skin. Hot water removes skin oils.
  • Sjögren’s patients with dry skin should pat dry after bathing and moisturize immediately while the skin is still damp. You can use petroleum jelly, bath oil or even some cooking oils such as safflower oil, olive oil, Canola® oil and Crisco®.
  • Drag moisture into your skin by using products that contain chemilas such as urea, glycerin, lactic or similar “metabolic” or alpha-hydroxy acids, such as AmLactin® cream or Carmol®.
  • Sjögren’s patients with dry and/or sensitive skin should avoid fabric softeners in the washer and dryer.
  • After swimming, make sure that you shower and then immediately use a moisturizer to reduce dry skin symptoms.
In addition to reading information from websites, there are several books which are valuable reading. Here's a list of several books, all of which I've read, and have found to contain some good solid information. 
  • A Delicate Balance - Living Successfully With Chronic Illness by Susan Milstrey Wells
  • In Defense of Food by Michael Pollan
  • Peripheral Neuropathy - When The Numbness, Weakness, and Pain Won't Stop by Norman Latov, MD, PhD
  • The Autoimmune Connection by Rita Baron-Faust and Jill P. Buyon, M.D.
  • The Balance Within - The Science Connecting Health and Emotions by Esther M. Sternberg, M.D.
  • The New Sjogren's Syndrome Handbook (Sjogren's Syndrome Foundation) by Daniel J. Wallace
  • You Don't Look Sick - Living Well with Invisible Chronic Illness by Joy H. Selak and Steven S. Overman, MD, MPH
I recommend visiting the Sjogren's Syndrome Foundation website, and while you're there consider becoming a member of the Foundation. Not only does your membership fee help fund much needed research, it also gives you access to discounts on books, CDs, patient seminars, and other informational materials; ensures that you receive the SSF newsletter, The Moisture Seekers; and offers assistance in locating and joining local SSF authorized support groups. 

And speaking of seminars, check out the list of speakers and topics which will be addressed at the upcoming Sjogren's Syndrome Foundation National Patient Conference:

This April 9-10, we invite you to come to San Francisco, California, and experience a weekend to Empower Yourself as you gain knowledge and heighten your understanding of Sjögren’s at the 2010 National Patient Conference!

Call 800-475-6473 or download the brochure today to register.

Overview of Sjögren’s Syndrome Nancy L. Carteron, MD, FACR, is a specialist in rheumatology, autoimmune disease and inflammation and is in private practice at the California Pacific Medical Center. She also is co-author of the book, A Body Out of Balance. Dr. Carteron will present a comprehensive explanation of the range of symptoms that Sjögren’s patients experience, explain their causes, and offer practical tips for managing them. 
Dry Eye & Sjögren’sStephen Cohen, OD, is a private practice optometrist in Scottsdale, Arizona, since 1985, founding board member of the Arizona Optometric Charitable Foundation, 2005 recipient of the “Arizona Optometrist of the Year Award,” and published often in professional journals for optometry and ophthalmology. Dr. Cohen has been a principal investigator on a number of FDA clinical studies involving ocular surface disease, Sjögren’s syndrome, contact lens solutions and contact lenses. This esteemed eye care expert will describe the latest methods and treatment options available for managing dry eye.
The Importance of Saliva: Dry Mouth and Sjögren’sTroy E. Daniels, DDS, MS, is Professor of Oral Medicine and Oral Pathology at the University of California, San Francisco, Schools of Dentistry and Medicine. Saliva is an essential body fluid for the protection of oral functions, and its value is seldom appreciated until there is not enough. Dr. Daniels, an expert on the oral aspects of Sjögren’s, will share his insight and years of knowledge about Sjögren’s and how it can impact your oral health. This enlightening talk will answer your questions about your teeth, gums, saliva, swallowing and more.
CNS Disease in Sjögren’s: Update and New Paths ForwardElaine L. Alexander, MD, PhD, is a rheumatologist, immunologist, and former Assistant Professor of Medicine at Johns Hopkins Medical Institutions, Baltimore, Maryland, and current Chair of the SSF Medical and Scientific Advisory Board. Her research has focused on potential causes and treatment of autoimmune, inflammatory, rheumatologic and neurologic disorders, with a particular emphasis on Sjögren’s. Dr. Alexander understands the challenges that may afflict patients with central nervous system complications of Sjögren’s and will share insights and strategies with you.
Banquet Awards DinnerAlida Brill, Keynote Speaker
Alida Brill is an author and has written and spoken about the personal and public issues surrounding chronic illness. Her latest book, Dancing at the River’s Edge: A Patient and Her Doctor Negotiate a Life With Chronic Illness, is a personal dual memoir, written in collaboration with her physician.

Her writing appears in popular and professional periodicals and journals, and she is a frequent guest on radio interview shows and television programs. She has been a featured speaker at a variety of conferences and a guest lecturer at many universities and colleges in the United States and abroad.

We are delighted to have Ms. Brill as our 2010 Keynote Speaker – you won’t want to miss this informative and moving presentation!

In addition, join us as we present our National Awards to volunteers, groups and organizations that have helped to further the mission of the SSF.
Lung Complications & Sjögren’sRichard T. Meehan, MD, FACP, FACR, is Chief of Rheumatology and Professor of Medicine at National Jewish Health in Denver, Colorado. Dr. Meehan also is Co-Director of the Autoimmune Lung Center at National Jewish Health and is a specialist in autoimmune diseases and rheumatoid conditions affecting the lungs. Lung complications are sometimes the most misunderstood and life-threatening manifestations of Sjögren’s. Dr. Meehan will add to your understanding of the various pulmonary complications and leave you with knowledge to share with your own physician.
Nutrition and Sjögren’sTara Mardigan, MPH, MS, RD, LD/N, is a Senior Clinical Nutritionist at the Dana-Farber Cancer Institute in Boston, Massachusetts, and Team Nutritionist for the Boston Red Sox. A very popular conference guest speaker, Ms. Mardigan will explain how different aspects of nutrition can impact Sjögren’s and share insights into making the best nutritional choices to maximize functioning and well-being.
Heart Disease: The Impact of Inflammation & Autoimmune DiseasesDebra R. Judelson, MD, FACC, FACP, is an internist and cardiologist in private practice in Beverly Hills with the Cardiovascular Medical Group of Southern California and is Director of their Women’s Heart Institute. Dr. Judelson is a nationally recognized speaker on heart disease and created the first program to educate doctors about heart disease in women with the American Medical Women’s Association. Dr. Judelson will cover the risk factors, symptoms and diagnostic tests for heart disease, a critical but often overlooked facet of women’s health.
The Doctor/Patient RelationshipSteven R. Weiner, MD, FACP, FACR, is an Associate Clinical Professor of Medicine/Rheumatology at the UCLA David Geffen School of Medicine. Dr. Weiner has a private rheumatology and musculoskeletal disorders practice in Woodland Hills, California. He has published over 100 articles, abstracts and textbook chapters and has lectured extensively, both nationally and internationally. Dr. Weiner will advise us how to maximize the time spent with healthcare professionals to ensure the best quality of care.
Measuring the Activity of Sjögren’s SyndromeSteven E. Carsons, MD, is Chief of the Division of Rheumatology, Immunology, and Allergy at Winthrop University Hospital in Mineola, New York. He is also Associate Chairman of the Department of Medicine and Director of Research at Winthrop University Hospital, Director of the Clinical and Translational Research Core at Winthrop Research Institute, and Professor of Medicine at State University of New York at Stony Brook. Dr. Carsons will discuss the methods commonly used to measure and manage Sjögren’s disease activity.
Neuropathy in Sjögren’sAnn Parke, MD, is Professor of Medicine at the University of Connecticut Health Center at St. Francis Hospital and Medical Center. Dr. Parke also has a clinical practice at St. Francis Hospital. Dr. Parke will be covering the various clinical aspects of the disease affecting the peripheral nerves and the autonomic nervous system. In some patients these may be the initial manifestations of autoimmune disease. In other patients these complaints may be a consequence of associated diseases such as diabetes and coeliac disease. She will also discuss what is currently known about the pathogenesis of these neurological complaints and how to diagnose and treat these complications.

This April 9-10, we invite you to come to San Francisco, California, and experience a weekend to Empower Yourself as you gain knowledge and heighten your understanding of Sjögren’s at the 2010 National Patient Conference!

Call 800-475-6473 or download the brochure today to register. 


ChyvonneB said...

The books you have listed look interesting. I'm going to look into reading a few of them. Thanks.

Anonymous said...

Thanks for those info. Some tips look really usefull.
I'm not member of the foundation, but I'm member of the french Sjogren foundation. It helps a lot to feel les alone with this syndrom.

mintradz said...

According to Arizona optometrist ~Gilber, symptoms of Sjogren's syndrome can involve the glands, but there are also possible affects of the illness involving other organs of the body (extraglandular manifestations). When the tear gland (lacrimal gland) is inflamed from Sjogren's, the resulting eye dryness can progressively lead to eye irritation, decreased tear production, "gritty" sensation, infection, and serious abrasion of the dome of the eye (cornea). Dry eyes can lead to infections of the eyes.