Perspectives on living with scleroderma

voicing the inner emotions of the chronically ill by Mark Flapan

Publisher: Scleroderma Federation in Peabody, MA

Written in English
Published: Pages: 233 Downloads: 118
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Subjects:

  • Scleroderma -- Psychological aspects.

Edition Notes

StatementMark Flapan.
Classifications
LC ClassificationsRL451 .F56 1997
The Physical Object
Paginationxvii, 233 p. ;
Number of Pages233
ID Numbers
Open LibraryOL707195M
LC Control Number97068795

We are proud to announce that Scleroderma NSW is currently funding the research project: Perspectives and preferences of patients living with systemic sclerosis (scleroderma) being undertaken by Dr V. Thakkar at Liverpool Hospital in Sydney. Thank you to all the Scleroderma NSW members who volunteered their time to participate in this study. Search the world's most comprehensive index of full-text books. My library.   Abstract and Case Study. Scleroderma is classified as a rare, autoimmune, collagen-vascular disease of unknown etiology that can be difficult to diagnose and treat.   Q: How can I prevent scleroderma? A: No one really knows enough about scleroderma to know whether there is a way to prevent the disease or delay its onset. Occupational exposures to the silica dust (not silicone) found in mines and stonework settings have been linked to scleroderma. Solvents used in.

The word ‘scleroderma’ means ‘hard skin’. Scleroderma affects the connective tissues of the body (tissues that hold together joints, muscles, blood vessels and internal organs). Symptoms vary greatly from person to person and also depend on what part of the body is involved. Living with scleroderma. There are several things you can do to limit the impact that scleroderma (also known as systemic sclerosis) has on your life. It’s not just medications and appointments. It’s about finding ways to adapt your day-to-day life and look to a new future. Because scleroderma can have many symptoms, a combination of approaches is often needed to treat and manage the disease effectively. Skin treatments: For localized scleroderma, topical medications often are beneficial. Moisturizers are used to prevent the skin from drying out, as well as to treat hardened skin. To improve blood flow so that. Scleroderma is a poorly understood illness that causes widespread hardening of the skin, especially on the hands and face. It also can damage the lungs, heart, kidneys, digestive tract, muscles and joints. It is a long-lasting (chronic) autoimmune di.

Diagnosis. Because scleroderma can take so many forms and affect so many different areas of the body, it can be difficult to diagnose. After a thorough physical exam, your doctor may suggest blood tests to check for elevated levels of certain antibodies produced by the immune system. Scleroderma Foundation missions: Support: To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals and educational information.. Education: To promote public awareness and education through patient and health professional seminars, literature and publicity campaigns.. Research: To stimulate and support research to improve. This Guide for New and Future Patients™ is a companion document to the Scleroderma FAQ™, also available through the Scleroderma Education Project website: . Think of the main Scleroderma FAQ as the page User Manual that came with your shiny new inch ultra high definition TV. This Guide is the equivalent of the Getting Started Guide that also came with the TV. Books for Juvenile Scleroderma features the ISN's Voices of Scleroderma book series, which is base on our web site! ISN. Experts for Juvenile Scleroderma. Juvenile Scleroderma Experts. It is very important to consult a scleroderma expert for the proper diagnosis and treatment of scleroderma, because it is a rare disease. Treatments.

Perspectives on living with scleroderma by Mark Flapan Download PDF EPUB FB2

Perspectives on living with scleroderma: Voicing the inner emotions of the chronically ill Paperback – January 1, by Mark Flapan (Author) See all formats and editions Hide other formats and editions. Price New from Used from Paperback "Please retry" $ — $ Author: Mark Flapan.

The Scleroderma Book: A Guide for Patients and Families, Maureen Dr. Mayes, M.D. Perspectives on Living With Scleroderma, Mark Flapan, Ph.D. You’re Stronger Than You Think, Peter Ubel, The Scleroderma Foundation is a qualified national nonprofit operating under (c)(3) status.

"Dr. Mayes' book is the ultimate resource for patients and their families seeking to gain a better understanding of this complex disease. Her compassion and dedication for her patients is evident throughout the book, from her easy-to-understand description of scleroderma and its manifestations, to more personal subjects such as depression, lifestyle changes, and patient-physician by:   My book is titled: Living with Scleroderma: A Survivor’s Story Of Hope Against All Odds.

It has paperback and hard cover versions. The cage and butterflies on the cover are meaningful. Scleroderma, also known as systemic sclerosis, is a rare connective tissue disease that results in skin thickening, vascular insufficiency and fibrosis of internal organs.

Approximat–, people in the U.S. have the systemic form of scleroderma, a multi-system disease that includes organ involvement.

Living with a chronic illness is an every day reality for many. One such chronic illness is scleroderma: a rare, chronic autoimmune disease that affects someAmericans.

The. I am reading a book called "The Scleroderma Book" by Maureen Hayes. It is definitely good and very informative but it seems to discuss research prior to Can anyone recommend other books on Scleroderma from a layman perspective which have mmore recent information.

Reflections on the Messy Complexity of Chronicity. I got my flu shot last Thursday morning. Unlike previous years, when my health care provider would offer walk-in “flu clinics” that involved checking in, confirming that my doc was part of the practice, then quickly moving through the line to an exam room, getting the shot, and leaving, in Covid Time I had to make an appointment.

Living with Scleroderma Three people share their story of how a terrible disease has changed their lives, and how they've bravely learned to live with it.

I'm am writing a book on understanding and living with scleroderma for both those living with it and doctors who would like to know more about it. (My co-author is my primary care physician who joined me on my hunt for the right team of specialists and a definitive diagnosis of scleroderma sine sclerosis.).

Abstract. Purpose: Systemic sclerosis or scleroderma is a chronic, rare connective tissue disease with negative physical and psychological implications.

Coping strategies used by scleroderma patients have not been studied in-depth. The objective of the present study was to gain a greater understanding of the coping strategies employed by people living with scleroderma.

Rheumatol Int. Nov;32(11) doi: /s Epub Nov Living with scleroderma: patients' perspectives, a phenomenological study. A review of the details of these treatments is beyond the scope of this chapter, but is covered in detail elsewhere in this book. Patients who have scleroderma should be seen by a rheumatologist for consultation.

It is important to recognize that scleroderma is a chronic systemic disease that has both a physical and emotional impact on the patient. Get this from a library. The scleroderma book: a guide for patients and families. [Maureen D Mayes] -- "The ultimate resource for patients and their families seeking to gain a better understanding of this complex disease."--Back cover.

Living with Scleroderma 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.

With a multidisciplinary approach to comprehensive care, this book is easily accessible for health care professionals in many fields. The new edition includes extensive updated material based on major developments in the field, with new chapters on personalized medicine, cancer complications, global perspectives on scleroderma, and more.

What is it like living with scleroderma. This video takes a look at some of the struggles that patients face when dealing with this life altering autoimmune. Systemic sclerosis (systemic scleroderma) is a connective tissue disease associated with autoimmunity, vasculopathy, and fibrosis.

The annual incidence is estimated to be 10 to 20 cases per 1. For people living with scleroderma, daily life can be extremely painful. The condition affects every aspect of their lives. The condition affects every aspect of their lives. To date, there is no cure for scleroderma, only medications and treatments that address some of.

The Scleroderma Book has long been considered the leading source of information for patients suffering with this disease.

Now comes the Second Edition of this highly respected volume, extensively revised by Maureen Mayes, M.D., the leading authority in this field.

Writing specifically for. The Scleroderma Book has long been considered the leading source of information for patients suffering with this disease. Now comes the Second Edition of this highly respected volume, extensively revised by Maureen Mayes, M.D., the leading authority in this field/5(8).

I have been living with scleroderma for about 30 years, more than half my life. According to the mortality charts when I was first diagnosed, I’ve been lucky to survive even the first decade.

But I decided early on that I didn’t want to know the odds. As one of my rheumatologists once said when [ ]. Scleroderma book. New York: Oxford University Press, (DLC) (OCoLC) Material Type: Document, Internet resource: scleroderma and pregnancy --Scleroderma and sexuality --Overlap syndromes and sclerodermalike conditions --Coping with scleroderma.

You and your doctor --Living an unpredictable life. Currently, it’s estimated that million people are living worldwide with Scleroderma, includ in the UK, with 1, being diagnosed every year.

This month, SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that.

Lara C. Pullen, PhD, is a medical writer based in the Chicago area. You Might Also Like Help Patients with Scleroderma Manage Musculoskeletal and Functional Limitations Pain Perspective in Scleroderma ACR/ARHP Annual Meeting: Fibrotic Complications of Scleroderma Explore This IssueMarch Also By This AuthorHepatitis Virus, Rheumatic Disease Connection Explored.

Your valuable skills and fresh perspectives make a difference in the lives of people with scleroderma. We offer books, videos, bracelets, apparel and more in our online store. eStore >> Donate. When you generously give to the Scleroderma Foundation, you support those living with scleroderma, as well as their family members and friends.

Make. Flapan M. Perspectives on Living With Scleroderma: Voicing the Hidden Emotions of the ChronicallyMass: Scleroderma Federation; A classic book about psychosocial issues by a. Books. Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On with Your Life by Rita Baron-Faust and Jill Buyon.

Scleroderma Book: A Guide for Patients & Their Families by Maureen D. Mayes M.D. Spanish-language resources. Impaired Swallowing Linked to Depression, Lower Quality of Life in Scleroderma, Study Finds.

Swallowing trouble in people with scleroderma is associated with lower quality of life and a higher incidence of depression, a study found. Scleroderma News, 02/05/ (Also see Dysphagia) When Depression Is Like a Cancer. Although these aren't approved for scleroderma, doctors often prescribe them to help.

At-Home Treatments, Physical Therapy, and Surgery If you have Raynaud's phenomenon, wear. Scleroderma is a chronic autoimmune disease of the connective tissue characterized by hardening and tightening of the skin.

(Scleroderma means "hard skin" in Greek). Other symptoms of scleroderma include skin discoloration, joint and muscle pain, swollen hands, narrowing of blood vessels, heartburn and other gastrointestinal issues, and calcium deposits under the skin.

Introduction. Systemic sclerosis (scleroderma; SSc) is a systemic, inflammatory and autoimmune disorder characterised by the excessive deposition of extracellular matrix in the skin and in inner organs which can lead to a wide range of organ damage.

1 Based on the amount of skin affected, a limited and a diffuse form of SSc are distinguished. Skin thickening occurs earlier in diffuse disease.There are two main types of this disease: Localized scleroderma affects limited areas of the skin and musculoskeletal system; it can make the hands waxen and immobile.; Systemic scleroderma is more widespread and can result in damage to the lungs, heart and kidneys, cause arthritis, slow gastrointestinal tract contraction, inflame muscles and cause dry eyes and dry mouth.