sjogrens syndrome brochure - PDF by avw11153


									Any chronic disease is life changing. Symptoms            you have any questions later after you have absorbed       experimental.These are all situations that people        People who have smoother experiences often
demand your attention.You have to adjust your             the information, you can refer to those notes and ask      with scleroderma have reported and they have also        report that it was still a difficult time because they
schedule to accommodate medications, doctors              questions. If you can, take a friend, a family member                                                               initially knew nothing about the disease. Patients
                                                                                                                                                                                                                                       Become a Member of the
appointments and treatments of various kinds.You          and/or a tape recorder along so the information can                                                                 say having a healthcare provider who listens and         Scleroderma Foundation
need to arrange for rest and relaxation and do things     be reviewed later.This reduces the chance that worry                                                                works with them as partners in their care makes it       When you become a
                                                                                                                                                                                                                                                                                 VOICE MA
more slowly than you used to.You need to balance          will inhibit hearing the information. It may also help                                                              much easier to adjust.                                   member of the
work and rest.You will have to confront changes in        your family member understand the disease.
                                                                                                                                                                                                                                                                                2006 #4

                                                                                                                                                                                                                                       Scleroderma Foundation,
your body and the way you see yourself as well as the                                                                                                                         The Emotions                                             you are supporting the
way others are used to seeing you.                        • Share your worry with people you trust, if this
                                                            method of reducing anxiety works for you.                                                                                                                                  organization’s mission of
                                                                                                                                                                                                                                       support, education and
                                                                                                                                                                              Denial, Anger and Depression
The people around you need to adjust as well.They           Spouses and partners can be especially eager to                                                                   Once testing has occurred and a diagnosis is made
live with the changes of your disease, too, even            know how you are being affected.                                                                                                                                           research.Your donation
                                                                                                                                                                              the next step is to determine what you want to do        helps pay for programs
though they don’t experience your symptoms.               • Recognize that this can be a difficult time.                                                                      about it. Sometimes when people get upsetting            in each of those three
                                                                                                                                                                                                                                                                   What’s Ins

                                                            Just knowing that fact might help you balance

                                                                                                                                                                              news they feel disbelief and refuse to acknowledge
                                                                                                                                                                                                                                                                                 Over Pain
                                                                                                                                                                                                                                                                                           for the Love

                                                                                                                                                                                                                                       areas, including:
                                                                                                                                                                                                                                                                    Gala Happe                          of the Game
                                                                                                                                                                                                                                                                               nings                                ”

Perhaps the biggest adjustment is learning to work
                                                                                                                                                                                                                                                                                                                        A Conversatio
                                                                                                                                                                                                                                                                                                                                       n with John

                                                            some of the challenges. Being proactive in doing
                                                                                                                                                                                                                                                                                                                                                   Varga, M.D.
                                                                                                                                                                                                                                                                                                                        Clinical Trials

                                                                                                                                                                              that anything is seriously wrong.This can make
with and through the changes in order to cope with          things can channel stress and anxiety into positive                                                               people feel better for a short time, but the reality     • funding over $1 million in original
daily life.We hope this pamphlet will help you learn        action. Examples include going after and finding                                                                  of the situation will eventually become undeniable.
to live well with scleroderma.                              information; asking questions of medical                                                                                                                                     research grants awarded to investigators
                                                            professionals; partaking in relaxation techniques                                                                 When you keep denying that something is wrong,             annually
The Beginning                                               and/or exercise; getting away for a day or a                                                                      you cannot move forward into helpful activity. One       • helping patients and their families cope with
Because scleroderma can present itself in so many           weekend either with someone or alone. All of                                                                      way to absorb and deal with the news of your               scleroderma through mutual support groups
different ways, diagnosing it can be difficult.That         these can help you reduce stress and can help you        reported being angry and discouraged.You are not         diagnosis is to give yourself some time to think and       and physician referrals
means many tests and many trips to the doctor’s             cope during this difficult time.                         alone in your frustration.                               accept what has happened. Listen to your favorite        • promoting public education of the disease
office before a definitive answer may be found.           • It has been reported that people who are                                                                          music, watch videos that make you feel good, bask          through patient literature, health professional
Finding the right physician who has experience              struggling with a set of problems new to them                                                                     in the sun in a garden, or lie in a warm tub and           seminars and publicity campaigns
                                                            often drop the fun activities in their lives because
treating scleroderma is important and can result in a                                                                                                                         think.
                                                            they don’t have the energy. Remember to retain           • Keeping notes and lists of questions is important.                                                              Your membership gives you the
quicker diagnosis and faster treatment. Contact the
                                                            the activities you enjoy and are capable of doing.         Start a workbook: keep your lab work reports,                                                                   following benefits:
Scleroderma Foundation or your local chapter for
                                                                                                                       medication lists, important phone numbers,
names of scleroderma doctors.                               Learn to delegate other activities to those who                                                                   • Think about your resources—people who care
                                                            care.They won’t mind, especially if it helps you           reports of appointments, and lists of questions in                                                              • our quarterly magazine, the SclerodermaVoice.
                                                                                                                       one loose leaf notebook that you can add to or           about you, your talents and abilities, available
For the patient, family and loved ones, the waiting         manage things better.                                                                                                                                                        The magazine includes updates on the latest
                                                                                                                       subtract from as necessary.                              information that can help you understand what
means lots of “what ifs” and anxiety can result from                                                                                                                                                                                     scleroderma research and treatments, profiles
                                                                                                                     • Express your concerns to your physician; if              is happening to you, crises you’ve confronted in
anticipating the worst. Sleeplessness, irritability and                                                                                                                                                                                  of patients who are overcoming their
                                                                                                                       he/she can’t help you, ask to be referred to             the past and conquered.
                                                          The Diagnosis
the tendency to be distracted are common at this                                                                                                                                                                                         condition to live productive lives; tips on
                                                          The second part of your journey starts after you have        someone who can.                                       • Think about your options: learn about your
point.The tendency to mis-hear what doctors say                                                                                                                                                                                          how to manage your disease
                                                          been diagnosed with scleroderma.The beginning of           • Remember to take a friend or a tape recorder             illness and how you can live and function with
because of worry is also common.                                                                                                                                                                                                       • newsletters and informational and
                                                          the diagnosis might be characterized by fits and starts:     along.                                                   it, meet others with scleroderma who are
                                                                                                                                                                                                                                         educational offerings from your local chapter
People sometimes report that any aches and pains          one doctor will say you have it, another might say you                                                                functioning well, talk to someone who can help         • Discounted registration fees to the
they have may be made worse by the increased              don’t; they both might disagree about what form of         Many people with scleroderma experience a                  you confront your illness and support you while          Foundation’s National Conference
anxiety during this phase.                                scleroderma you have, or its severity.                     smoother course. For example, you might have tests         you do it.
                                                                                                                     that all point to the same diagnosis and you also have   • Call the local chapter or join a support group of      Please consider joining the Foundation
                                                          You might get a definite diagnosis of scleroderma and      a physician who knows what the diagnosis means and         the Scleroderma Foundation.                            today. A membership form is attached on
                                                          then have a physician say that it is terminal,
                                                                                                                     can either treat you or refer you to someone who         • Think about the possible consequences of not           the reverse side of this panel.
• Take notes about what your doctor tells you. If         untreatable or that the treatments are all                 can.                                                       tending to yourself—increasing worry, pain,
                                                           disability, and depression.                          may take the form of praying, “God, if you’ll only
To become a member of the Scleroderma
                                                                                                                take this from me, I promise...” or being willing to
                                                                                                                                                                                        Our Three-Fold Mission Is                            Scleroderma
Foundation, fill out this form, tear at
perforation and send with your check or credit
                                                        Anger and Depression                                    take medicine with uncomfortable side effects if only                      Support, Education and                            F o un d at i on
card information to:                                    After you’ve had time to understand the                 it might “cure” the disease. Some go to herbalists,                                                                         Support • Education • Research
                                                                                                                chiropractors and acupuncturists in hopes of a
Scleroderma Foundation
                                                        implications of the diagnosis, you may get angry
                                                        and depressed at the same time.This is the next         “cure.”These are all ways of bargaining and another
Attn: Donations                                                                                                 way of denying the reality of the disease.
300 Rosewood Drive, Suite 105                           phase of moving toward an acknowledgment that
Danvers, MA 01923                                       changes are occurring.This isn’t an easy phase to                                                                              Support: To help patients and their families
                                                        move through—not for you, and not for those                                                                                    cope with scleroderma through mutual support
I would like to become a member and help support
                                                        close to you. But it is necessary, and as long as you   So, how does a person come to accept scleroderma?
the Scleroderma Foundation’s efforts to improve the                                                                                                                                    programs, peer counseling, physician referrals,
                                                        know you’re going through it, go through it with        There isn’t any one way that patients reach that
lives of those with scleroderma, and to assist in the                                                                                                                                  and educational information.
search for a cause and cure. Enclosed please find my    your eyes open.                                         stage; some never do and some do so in part.
check (or credit card information) in the amount of                                                             Patients who cope well with their disease have these
$_____.                                                 Anger can be a very energizing emotion. It’s            things in common:                                                      Education: To promote public awareness and
                                                        during this time that patients typically do the                                                                                education through patient and health professional
Donations of $25 or more can be                         following:                                              • They have discovered the hope and strengths they                     seminars, literature, and publicity campaigns.
acknowledged as members.                                                                                          have inside
                                                        • Find and join support groups                          • Have found people to help them along their way
                                                        • Seek out a physician who knows how to treat
                                                                                                                                                                                       Research: To stimulate and support research to
   I am not interested in members benefits.                                                                       (friends, relatives, loved ones, healthcare                          improve treatment and ultimately find the cause
                                                          scleroderma                                             providers, scleroderma support groups,
   However, I would like to make a
                                                        • Search libraries and the Internet for                                                                                        of and cure for scleroderma and related diseases.
                                                                                                                  counselors, or faith groups)
   contribution in the amount of $_____.                  information they feel might be helpful                • Have learned to help others by getting involved
                                                                                                                  in scleroderma organizations, educating their
Name: _________________________________                 Depression can slow people down. Patients
                                                                                                                  friends and the public and helping other patients
                                                        describe feeling negative about everything, an
Address: _______________________________                                                                          through difficult times
                                                        increase in physical symptoms and
                                                        helpless/hopeless feelings, as well as a decrease in    The most important underlying factor seems to be
City: __________________________________
                                                        energy.                                                 that patients who successfully cope with scleroderma
State/Zip: ______________________________                                                                       have discovered that their lives are worth the fight.
                                                        Fearfulness is also common.This is the phase
                                                        during which a counselor (preferably someone
Country: _______________________________
                                                        who has experience helping people deal with             Resource
Telephone:______________________________                chronic disease) could be helpful since he/she can
                                                                                                                Successful Living with Scleroderma:A Balanced Strategy
                                                        be objective and help you to get angry/depressed
                                                                                                                Workbook, by Robert Phillips, Ph.D., Director,
E-mail: ________________________________                feelings out in the open in a safe place—not on
                                                                                                                Center For Coping. Available for purchase in the
                                                        the job, directed at your loved ones or yourself.
                                                                                                                Scleroderma Foundation store at
Credit Card: ____________________________               Your physician might also prescribe a medication
                                                        that will help your energy level and even treat the
Credit Card #:___________________________               physical pain.                                          Please note that this pamphlet is provided for
Exp. Date: ______________________________
                                                                                                                educational purposes only. It is not intended to
                                                        Bargaining and Acceptance                               substitute for informed medical advice.                                                 A publication of
Name on Card: __________________________                While trying to cope with anger and depression,                                                                                             Scleroderma Foundation
                                                                                                                (The Scleroderma Foundation thanks Elaine Furst, R.N., B.S.N., M.A.,                                                       Coping with
                                                        some people find themselves bargaining.This stage                                                                                       300 Rosewood Drive, Suite 105
                                                                                                                of Los Angeles, Calif. for her assistance in the preparation of this
                                                                                                                brochure.)                                                                            Danvers, MA 01923                    Scleroderma

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