See pictures of Vickie's legs when they first broke out ( VIEW ) Scleroderma is a chronic disease with no known cause or cure. It is very misunderstood and difficult to diagnose. For this reason, many patients have been ill for years without knowing the true nature of their illness. Scleroderma is a disease of the vascular and immune system, as well as a disorder of the connective tissue. While the word literally means "hard skin," the disease can present many different symptoms making diagnosis very difficult. Many physicians are not familiar with Scleroderma and are unable to satisfy the "need to know" held by their patients. This has led patients to hide their Scleroderma rather than try to explain their baffling disease to friends and relatives. Scleroderma usually manifests itself first in the hands with the skin becoming hard and tight, but any organ of the body may be affected. Pain of the muscles and joints, tightening of the skin, fatigue, weight loss, swallowing difficulties or any number of non-specific complaints may be the first symptoms presented. Scleroderma has no respect to age, sex, or ethnic background, but women are afflicted at four to one ratio over men. The two major forms of Scleroderma are localized and systemic. Localized manifests itself mainly in the skin or bone and muscle, while systemic can involve the entire body system. Treatment is limited to supportive drugs a physical therapeutic measures which can contribute to improving the function and comfort of the patient. While seemingly "rare" Scleroderma is more prevalent than muscular dystrophy. There are over 300,000 people suffering with this multi-faceted disease. Because of the Scleroderma Foundation, patients themselves are able to spread the word. Those who were once timid when asked about their illness, now have the courage to discuss their condition. Through local chapters, patients work together to make the public in their area aware of the problems and needs of the Scleroderma patient. Area newspapers have printed life style articles of these patients, portraying what it means to try to live a normal life coping with this chronic illness. Not only does this make the public more aware, but each effort opens the door for another patient. If you are one of these people, or know someone who has scleroderma, the Foundation may be the entry into a more knowledgeable attitude about the illness. At present the cause and cure of Scleroderma remains unknown. Your support is needed to find a cure soon. No one is exempt from Scleroderma. The above information is from the Scleroderma Foundation booklet. A Non-Profit Patient Support, Educational and Research Foundation Info Line 1-800-722-HOPE Scleroderma Foundation Distributes Educational Brochure to Physicians Project Is Funded by Actelion, Makers of Tracleer™ One of the Scleroderma Foundation's goals is to help patients get a quicker diagnosis of their scleroderma. There are many stories of patients who have gone from doctor to doctor, even for several years, before getting a conclusive diagnosis of their medical condition. To help doctors better understand scleroderma, and diagnose the disease more quickly, the Scleroderma Foundation has created a new Physician Education Brochure and distributed this educational piece to thousands of doctors. View the Physician Education Brochure. If you are not able to view this PDF file, it means you do not have Adobe Acrobat software installed on your computer. Download Adobe Acrobat software NOW, for FREE, by clicking on the picture below!
The Scleroderma Foundation continues to make
this brochure available.
New Video from the Scleroderma Foundation Discusses Coping Positively with Scleroderma Dr. Philip Clements of UCLA is Featured This 12-minute video for newly diagnosed patients and their families presents scleroderma patients (and their spouses) positively reflecting on the challenges they have faced, and how they have learned to live with scleroderma. Scleroderma expert Philip Clements, M.D., of UCLA, is also featured in this upbeat video, which was produced with the help of the Foundation's Southern California Chapter. Available only through the Scleroderma
Foundation, this professional-quality video is offered for only $5
including shipping. To order now with your credit card, call the
Scleroderma Foundation * Practical Tips for Living with Scleroderma If your Internet connection is 56K or faster, you can view our "Living Well with Scleroderma" video online! Click here to view streaming video Do you have Pulmonary
Arterial Hypertension? Visit our Tracleer™ Page for complete
information about this important new treatment option. Overview of Tracleer™ and Pulmonary Arterial Hypertension View "Tracleer™ Is Here!" This document provides an overview of Tracleer™, a new medication for Pulmonary Arterial Hypertension (PAH). It discusses the importance of proper diagnosis of PAH, the warning signs of PAH, the potential benefits of treatment with Tracleer™, and the treatment's potential side effects. Coping Tips Archive Exercise Can Help! By Jane Bradenstein, P.T., University of Pittsburgh Medical Center (originally published in Scleroderma Foundation Newsline, vol. 2, no. 3, Summer/Fall 1999) Editor's note: You can skip directly to the subheads that interest you, by clicking on these links: As physical therapists, there are some things that we have learned over the years about scleroderma, and there are even more things we wish we understood better and could share with you. But, the information is just not there at this point in time, so as health professionals, we experience a certain amount of frustration, just like you do. What we would like to pass on to you are some of the things that we have found to be helpful and important. One thing we do know is that exercise is imperative in order to maintain the highest level of functional independence possible. We find that you can and should do different things on different days. There are several types of exercise and any or all can be beneficial for you, depending upon your particular needs. These can be range of motion, stretching, strengthening, and/or conditioning/aerobic exercises. Our suggestion is to do range-of-motion exercises to all joints after a warm shower, first thing in the morning to "get things going." Then, later in the day, set aside another period for exercise. It may be helpful to take a pain relieving medication, such as an extra strength Tylenol one hour before you do your exercise program. Depending on how you feel, you can really stretch those tight areas, strengthen the weaker ones, or do something aerobic, like walking, hiking or even swimming. Basically, the second workout should target the areas that need work. We have found that warm applications are beneficial prior to stretching exercises. Some examples of heat include paraffin baths for hands or feet, electric moist heating pad (for example, the thermophore), microwaveable hot packs, and warm showers or baths. These heat applications should be warm, but not hot as you could bum your skin. Use these for 15 to 20 minutes, no longer than half an hour. If you are having joint aching or stiffness, you can use the heat several times followed by the stretching exercises. When doing range-of-motion and stretching exercises it is very important to go as far as you can, even to the point of pain and hold at this end of the range point for at least ten seconds. Do not bounce with the exercises; a sustained stretch is more beneficial. Sometimes it is helpful to have someone else help by giving some additional pressure at the end range position to get a better stretch. Common areas that experience tightness are the hands, mouth opening, and neck areas, but many other areas can be involved. There are many instances where the skin tightening eases off, but if you have not been stretching you will not be able to take advantage of this. You must seriously think, "use it or lose it" for each motion. It is really important to take each joint through the full range-of-motion each day and to note any changes from the day before. If an area is stiffer, then be a bit more vigorous to get that last degree of motion. Strengthening is another important part of a general exercise routine. Lifting your arm or leg against gravity is actually strengthening and may be the beginning of the program. You could then move to elastic loops (Therabands), cuff weights, or machines for resistance. We do not normally recommend the use of barbells this is too much stress on the tiny hand joints. Therabands are available in any Physical Therapy (PT) clinic and work well for strengthening. The best thing when using a Theraband is to make loops in the end to go around your wrist or ankle and tie the other end to something strong. A visit to a physical therapist may be beneficial for instructions. We suggest you do strengthening on an every-other day schedule. This gives the muscles a chance to recuperate from the activity. Conditioning exercises help with endurance. These exercises can be in the form of walking, riding a bike, or swimming in a heated pool. These activities are good unless you have been told by your doctor to avoid them. The best exercise is something that you want to do. There is no competition; do what you can, but DO IT! If you are unable to tolerate twenty minutes, start with a few minutes and gradually increase. Be pleased with what you are able to accomplish. These types of exercises increase your cardiovascular fitness, which helps combat the fatigue, and also help you to feel better about yourself. If you are going to be swimming, it is important to maintain skin health with moisturizing creams. Those with a high glycerin content seem to be helpful to many folks. Physical Therapists are real fans of group exercise programs, as you derive encouragement from each other and it is not quite as boring. You make a commitment to yourself and your friend that you are not likely to break. There are two programs that are designed for people with any or all types of arthritis. The Arthritis Foundation and health professionals specializing in inflammatory diseases approve both. PACE is People with Arthritis Can Exercise, a land-based group program, and the AFYAP (Arthritis Foundation/YMCA Aquatics Program) is a program of warm water swimming exercises. Both are taught by people specifically trained in the programs and who are aware of the limitations or cautions important to you. The following exercise suggestions may be helpful. They are a good start, but they are not all inclusive. It may be helpful to see a physical therapist for evaluation and recommendations to help with your exercise program. Many times it is helpful to have a professional to ensure that you are working hard enough. There are many therapists who can be very helpful to you, but may not have worked with a patient with scleroderma before. Again, we would like to reinforce the importance of doing some exercises every day. The stretching may be painful, but it is imperative. We would also like to stress that you not start any exercise program without the full approval of your physician(s). General Instructions These exercises are to be done daily, preferably early in the morning after heating your stiff joints. Each exercise should be repeated five times. After several days of performing the exercises, try to establish an estimate of your range of motion and the level of pain you have for each joint. On those days that you find either decreased motion or increased pain in any joint or muscle area, you should continue to use heat and repeat exercises three additional times for those areas. In this manner, you should be able to detect limitations and prevent the loss of motion of a joint. You should decrease the number of exercises temporarily for only I those areas where an acute flare-up has occurred (hot, painful, swollen joint), and increase them when the flare subsides. All exercises are designed to limber up muscle and joint stiffness as well as maintain maximal joint motion. These exercises are to be performed in your bed, if firm enough, or on any other flat surface while lying on your back, and without pillows.
Final Reminder These exercises should be done daily, slowly, and without causing increased pain. The following list of facial exercises has been prepared by the Physical Therapy Department of Presbyterian University Hospital of Pittsburgh. The exercises are designed to:
Do the stretches gently but firmly. Hold each position five to ten seconds before relaxing.
Insert a stack of tongue depressors, bound by a rubber band, into your mouth from your front middle teeth to your back molars on one side. Use only as many tongue depressors as necessary to stretch your jaw. Repeat to the opposite molars.
Practical Tips for Living with Scleroderma By Claude Springer, D.D.S. (originally published in Scleroderma Voice, Winter 2000–2001) Editor's note: You can skip directly to the subheads that interest you, by clicking on these links:
My wife Marcia has had scleroderma for over 20 years. When she was first diagnosed, I ran to my pathology textbook (I am a dentist) and got scared out of my wits. After further investigation we realized she had the CREST syndrome, and I was able to calm down. From that point on I was able to concentrate on devising ways to help her with the everyday tasks of living. Some of these strategies may be helpful to others. Problems gripping with fingers Marcia has trouble grasping items with her fingers. The following are some practical aids we use to make daily life easier:
For problems associated with eating and drinking
Sarcoidosis, A
Medical Mystery What It Is | Who Gets It | What It Does | Statistics | Diagnosis | Treatment | Research | My Story | Links What It Is, What It Isn't Sarcoidosis is a relatively rare autoimmune disease that can affect the skin, lungs, heart, brain and nervous system, eyes, and other organs. Although the disease was first recognized about 100 years ago, little is known about what causes it and there is no cure. As an autoimmune disease, Sarcoidosis is similar to diseases like rheumatoid arthritis and lupus in how it behaves and how it is treated. Depending on the severity, treatment may be needed to control what Sarcoidosis does. Sarcoidosis can go dormant on its own or with treatment, and its symptoms often do not recur after the initial onset. In a small percentage of cases, Sarcoidosis is chronic, requiring on-going treatment, with possible occurrence in other organ systems. Chronic Sarcoidosis is apparently cyclic in its activity level, with flares of symptoms and more dormant periods lasting weeks or months. No markers have been identified as indicating how Sarcoidosis is going to behave in any individual or how an individual with Sarcoidosis is going to respond to treatment, although a physician experienced with Sarcoidosis may be able to make a "good guess" based on his or her experience. Whether he or she is willing to voice that guess is another story entirely! Despite a century of research, little is known about Sarcoidosis. Research has discovered what it is not. Among other things, it is not a cancer or tuberculosis or AIDS-related. It is not caused by pine pollen or other identifiable agents like pollution, airborne or otherwise. It is not progressive or contagious. You did not get it from someone else and you cannot give it to another person. As far as we know, nothing you did specifically caused your Sarcoidosis. Who Gets It Sarcoidosis is most often diagnosed in young adults (20-40 years old), occurring roughly equally in men and women. It is much more common among African-Americans than among white Americans, and is very rare among Hispanic-Americans, Asian-Americans, and others racial groups in America. Demographics worldwide are variable, with the highest occurrences in Scandinavia and among white, red-haired Irish women. Although these facts are interesting, they have been of little help in identifying what causes Sarcoidosis. What It Does In Sarcoidosis, the immune system starts to attack the body's own tissues, forming small lumps called granulomas. These are like small scars that interfere with the normal function of the organ attacked by the disease. Even after treatment, the scarring can remain and can continue to have some effect on organ function. For example, Sarcoidosis of the eyes can cause blindness if not detected and treated promptly, and pulmonary Sarcoidosis can cause permanent scarring that interferes with breathing during exercise even with treatment. The majority of people diagnosed with Sarcoidosis lead relatively normal lives after diagnosis, with or without treatment, despite the lack of cure. Some Statistics About half of all patients diagnosed with Sarcoidosis have no or mild symptoms and do not need treatment of any kind. For example, a patient with no respiratory symptoms may have an abnormal chest x-ray during their yearly check-up. Further tests may or may not be ordered, and Sarcoidosis is suspected but not confirmed. Since the patient is not bothered in any way, there is no need to do anything about it. The patient needs to be aware that they should have check-ups on a regular basis, just to make sure that their Sarcoidosis is not starting to flare, and their doctor needs to be aware so that a Sarcoidosis flare can be considered if the patient does report symptoms at a later time. About half of the rest receive treatment and go into remission, usually with no relapse. Those with Sarcoidosis of the skin or eyes usually fall into this group, as do those with Sarcoidosis of the lungs who have exhibited some mild to moderate symptoms. For these patients, Sarcoidosis may be a bother for 6-18 months, but then live goes back to normal. Again, the patient needs to be aware that regular check-ups are important, and their doctors need to be aware of that history. For the remainder, Sarcoidosis is considered to be chronic, never quite going completely into remission, even with treatment. Serious pulmonary Sarcoidosis with life-threatening symptoms, neurosarcoidosis, and cardiac Sarcoidosis are most commonly this type. For these people, Sarcoidosis alters what has been known as normal. Even with the more serious forms of Sarcoidosis, though, life can be relatively normal. The patient with chronic Sarcoidosis may need to make some changes to accommodate their new limitations, but they can continue most if not all of their normal activities, even going on to have children. On-going treatment for Sarcoidosis can have an impact on normal life, from side effects to scheduling regular visits to receive one's treatment. Chronic Sarcoidosis is like any other chronic illness is this respect. Unfortunately, about 5% of those diagnosed die as the result of this disease. Death results because the granulomas have a severe impact on a major organ like the heart or brain, and cannot be controlled with the available treatments. There is hope, though. New treatments are being tried for chronic Sarcoidosis of these major organs, in attempt to prevent death from this disease. Again, these statistics are interesting, but not terribly important for the average person just diagnosed with Sarcoidosis. This disease is very individual, with each person showing a unique collection of symptoms which can be attributed to their Sarcoidosis, before diagnosis, during treatment, and afterwards. How It's Diagnosed There is no one test specific for Sarcoidosis. Sarcoidosis of the lungs is usually diagnosed using chest x-rays, pulmonary function tests, blood tests, and bronchoscopy with lung biopsy. Similar tests are used for suspected Sarcoidosis of other organs. The diagnosis is by elimination of other possible conditions rather than specific identification of Sarcoidosis, although the results of biopsy are definitive for the identification of granulomous tissue. How It's Treated Sarcoidosis is usually treated with steroids initially. For Sarcoidosis of the skin or eyes, the treatment is topical (as a cream or ointment), although injection of steroids into the eye may be needed if serious iritis or uveitis is found. Oral steroids - e.g. prednisone or prednisolone - are used for other forms of Sarcoidosis, with treatment lasting from 6-12 months. These drugs suppress the immune system so that the sarcoid granulomas can (hopefully) heal themselves with little or no lasting damage. If the patient does not respond to this treatment in few months or long-term treatment is necessary, small doses of other drugs like methotrexate, cytoxin, and imuran may be used. These are cytotoxins (cell-killers) often used to treat cancer. In very small doses, though, they are relatively safe immuno-supressives. Thalidomide has also been used recently to treat neurosarcoidosis and cardiac Sarcoidosis when steroids are not effective or must be continued long-term to control the disease. Although these drugs are much more powerful than even steroids, they tend to have fewer overall side effects and the serious side effects can be more easily detected while still mild and before long-term damage occurs. For chronic Sarcoidosis patients, treatment is usually a trade-off between side effects and the effects of the Sarcoidosis itself. Hope for the Future Since Sarcoidosis is relatively rare, there is no great fund of money for research into its causes and potential treatments or cures. There is some work ongoing, in the U.S. and world-wide, mostly at very low levels such as cellular physiology, immunology, and genetics. For example, one recent publication had an article from a group in Japan that has discovered what may be a marker for a genetic risk factor for Sarcoidosis. Whether work at this level will lead to anything of clinical use remains to be seen, but these published results are small steps along the path to understanding of this disease. Research specifically into Sarcoidosis may not be "high profile" or widespread, but work in other areas may also lead to hope for Sarcoidosis patients. The use of thalidomide for neurosarcoidosis directly stems from the clinical work with this drug and rheumatoid arthritis, "crossover" from other research. Also, work with various drugs for asthma and cystic fibrosis may help the patient with chronic pulmonary Sarcoidosis, at least symptomatically. It is impossible to predict the direction from which a major step in the understanding of this disease may come, but there is research and there is hope. From Personal Experience Diagnosis & Fear For myself, being diagnosed with Sarcoidosis was very frightening: a potentially life-threatening disease with unknown causes and no cure. At first, I did not even know what questions to ask, because I had never heard of Sarcoidosis despite being well read about medical matters. A few days of browsing on the web, seeking information about Sarcoidosis, lead to a point where I at least knew what questions I needed to ask the doctor about my disease and its treatment. I was fortunate to have a doctor willing to sit down with me and answer my questions. I made an appointment with him specifically for that purpose, and I did get some reassurance from the answers I received. Since then, I have continued seeking information about Sarcoidosis and have made a great many friends on the web with this disease and other lung diseases who have been able to provide me with support as well as information. For me, understanding what is known about this mystery disease has help ease the fear. Sharing what I have learned about this disease has given me strength and hope that are not available to me otherwise. Grieving for a Lost Self Any diagnosis of chronic disease starts a grieving process. I had to give myself time to accept that I have a disease for which there is no cure, which has forced me to make changes in my life. I had to mourn the "normal self" I once was and no longer can be. I had to go through the grief process, through anger and bargaining and questioning and depression, to reach acceptance. And this while on steroids! A loving though clueless husband has been my most important support, thank God! He has little understanding of what this disease is and exactly what it does to me on a day to day basis, but accepts me no matter how rotten I feel or how outrageous I've been behaving from the steroids. Like most of those close to us with chronic illnesses, my husband does not really want to know all about my disease. I think he too is somewhat frightened by the idea that this thing could kill me. I am fortunate, though, that he is accepting and loving, even without that kind of understanding. The rest of my support has come from online friends with Sarcoidosis and other lung disease who have "walked the path before me." They understand in a way my husband cannot what I am truly coping with on a daily basis. I've come to realize that I need both kinds of support to fully cope with this chronic illness. A Partner in My Medical Care Since my diagnosis in March 1998 and the subsequent realization in September 1997 that I have chronic pulmonary Sarcoidosis, I have learned that it is important to become a partner in my own medical care. As I have learned about this disease and about myself, I have come to realize that I will not see a doctor who is not willing to work with me and treat me as a reasoning, adult human being, without patronizing me and without scorn for what I may or may not know about my condition. I have one doctor who acts as coordinator of my care, keeping track of all my medications and receiving notes from all of the other doctors I see to collect all of this information in one place. I see specialists to deal with specific issues and problems, with any information from them returned to that coordinator. A Note About Health Insurance Like most working Americans, I am covered by private health insurance. As a person with a chronic disease, I've learned that I need to make sure that my medical coverage continues if and when I change jobs, so that insurers are not given the opportunity to not cover me. This may sounds like I am trying to trick the insurers, but I do not see it that way. There are many ways for them to see that I do not abuse the system even though I may submit the most claims of anyone in my group health plan. I am entitled to that coverage under the law, and will take whatever steps are needed to see that I get it. Sarcoidosis on the Web There are a number of sites with information about Sarcoidosis on the Internet. A few are listed below. For straight information, sites from the National Institutes of Health, Vanderbilt University, National Jewish Medical Center, and the Cheshire Medical Center are the best. Their facts are reliable and each one has slightly different information about this disease, especially the minor symptoms and effects. These sites can be quite technical, though, so be prepared to either look up unfamiliar terms or get lost in the "pidgin Swahili" of medical and biochemical jargon. For online support, the Chronic Lung Disease Forum and the Sarcoid Connection are both great sites. The former has a bulletin board to which you can post messages and communicate with other chronic lung disease patients, and the latter is a site run by a Sarcoidosis patient with a chat room. There are also sites sponsored by Sarcoidosis support groups and activist organizations trying to garner support for Sarcoidosis research. More sites are being added regularly, by those with this disease and by those who treat this disease. Type "Sarcoidosis" into the search box of your favorite search engine for more links. Like any medical information on the web, though, consider its source (hospital or research center, an individual or support group) and take any questions you have to your doctor for answers. Sarcoidosis:
A Primary Care Review
Let's Breathe - Aims to promote public awareness of sarcoidosis. Life and Breath Foundation: In Search of a Cure for Sarcoidosis Lung Information and Service Center's Sarcoidosis Packet National Institutes of Health: Sarcoidosis The National Sarcoidosis Foundation at St Michael's Medical Center National Sarcoidosis Resource Center Royal Brompton Respiratory Unit Sarcoid Connection - Information and support group. Sarcoid Connection Webring - Ring of sites providing information and/or support to those with sarcoidosis. Sarcoidnet: The London Ontario Sarcoidosis Information Connection Sarcoidosis - An exhaustive list of links, including technical articles. Helpful for physicians. Sarcoidosis - List of links, compiled with patients in mind. Sarcoidosis, a Medical Mystery - A well-written essay by a patient. Good starting point for newly diagnosed patients. Sarcoidosis Sufferers and Their Families Sarcoidosis, Vasculitis and Diffuse Lung Diseases Sarcoidosis Worldwide Support Group Sarcoidosis/Boeck - Dutch site with basic information and links. In English and Dutch. You Have Sarcoidosis: What Does This Mean to You? - Fact-sheet for newly diagnosed patients. Sarcoidosis: A Primary Care Review Mysterious Disease Usually Responds to Treatment Use of Melatonin In the Treatment of Sarcoidosis The Psychological Impact of Scleroderma By Shirl Tarko-Halpern (originally published in Scleroderma Voice, 2003 #2) This article is about a side of scleroderma that receives too little attention—its psychological impact on the affected individual and his or her family.
I am a 48-year-old psychotherapist, diagnosed with diffuse scleroderma two years ago. It has taken me that amount of time to sort through my reactions and feelings, begin to adjust to the change in my sense of self and my life, and regain some sense of equilibrium. The Story of My Life Has Changed My experience with scleroderma has made me acutely aware that we all construct narratives for our lives, narratives that not only help us make sense of our past and present experiences, but that anticipate how our lives will play out in the future, as parents, professionals, spouses. Because they make our lives seem predictable, these narratives provide a sense of security for us. One of the most powerful effects of being diagnosed with scleroderma was to completely undermine my narrative, my dreams of how the remaining years of my life would play out. I was heartbroken at the thought that the future I had imagined with my family and for my career would not happen, and I was terrified at how unpredictable and uncontrollable the future suddenly seemed. Both the diagnosis and the rapid progression of the disease were traumatic experiences for me. My physical appearance changed rapidly. Within months I experienced a loss of independent functioning and found myself needing assistance with even the most basic tasks. I was unsure whether I could continue to work as a therapist, supervisor, and teacher. I was upset by the pain I was causing my children. I also felt very isolated. I had a rare disease that many people had never even heard of, and I felt there was no one to share the experience with outside of my family. Worry Drove My Thoughts Inward The overwhelming worry about my health, the need to figure out what I could and could not do, and the need to adjust to new limits and physical dependence, all led me to re-direct my emotional energy inward. I became more self-preoccupied. I lost interest in the “outside” world, and even to some extent in my friends. In retrospect, these were signs of depression. Yet the inward focus was also necessary, as I struggled to adapt and regain my equilibrium. At the age of 47, I had to adjust to a more dependent and seemingly diminished “Shirl,” and to figure out who this Shirl was and could be. Adapting and Moving Forward As I continued to adjust on many fronts, I also began to think about my life in new ways. Talking with my husband about my fears and feelings was a critical foundation in this process. He helped me feel I was not quite so alone with the disease. I realized I could still have expectations, relationships, work; I had not lost my competence as a professional and mother and wife. I began to build a new narrative, a new story of my own and my family’s lives. This one was far more flexible, to accommodate constant and unpredictable health problems and other uncertainties. At some point, probably during the past year, I felt that I could regain control over central parts of my life; for instance, how I wished to be treated by friends and colleagues, not as an invalid, but with care and empathy and respect for the old self that was still in me. I decided I could not put my life on hold each time a new health issue arose, not least because some such issues could take weeks or months to resolve. I had to get pleasure and give pleasure, no matter what was going on. I realized that the self-preoccupation was adaptive, in that I focused on how to be as healthy as I could. I paid closer attention to my diet. I did exercises suggested by a physical therapist, and I made sure to walk every day. These were small things, but aside from their health benefits they helped me regain a modest feeling of control over my life and my body. I realized that, while in some ways the scleroderma caused a complete break from my previous life, in other ways it was part of life. I had faced difficulties before, and they had shaped me as well. I know that I will likely experience many difficulties in the coming years. I am still scared. Yet I think I have a bit of a foundation to stand on again. In the coming year I am going to focus on linking my professional experience as a therapist to my personal experience of scleroderma. We are not alone with this disease. A small group of incredibly dedicated physicians —including my own doctor, John Varga—is slowly but steadily advancing treatment and basic understanding of scleroderma. I hope we will also begin to pay fuller attention to its psychological impact.
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Copyright (c) 2000 - 2006 Vickie
Honea
All Rights Reserved Dr.
Rick Honea, Th.D.,CH.
cleroderma,
or systemic sclerosis, is a chronic connective tissue disease
generally classified as one of the autoimmune rheumatic diseases.
Sarcoidosis