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Charting the Course Conference Award Winners Volume 30, Issue 6 June 2012 National Patient Conference 2012 NEWS Charting the Course Conference Award SSF_12116.02 v/f 941.531.7280 e [email protected] n April 20th and 21st, Winners over 400 Sjögren’s AL patients and family T CONFERENCE O 2012NATION very year we recognize our most dedicated volun- PATIEN members from 34 states and teers through awards that are announced at the Charting two countries came together Course Awards Banquet held during our National Patient the in La Jolla, California, to E Conference. We could not accomplish all that we do “Chart the Course” at the without the hard work and dedication of volunteers like 2012 National Patient these awardees. Conference. Many of the par- Healthcare Professional Leadership Award – ticipants attended our Daniel J. Wallace, MD sponsored by Welcome Reception on Thursday evening aniel Wallace, MD, to help kick off our is the recipient of our 2012 Page 1 C M Y K two-day conference. Here Healthcare Profes- Final Sjögren’s Syndrome Foundation D National Patient Conference: Awards Program: 5.5”attendees, x 8.5” with full bleed many of whom were at- sional Leadership Award tending a Foundation conference for the first because of his significant time, were able to meet and get to know other Sjögren’s and unique contributions to patients, National Conference speakers and the Founda- Sjögren’s patients and the mis- tion Board of Directors and staff. sion of the Sjögren’s Syndrome During the two-day educational program, attendees Foundation. In addition to of- enjoyed twelve informative lectures covering a wide array fering exceptional clinical care of Sjögren’s manifestations and treatment options. Pre- for rheumatic disease patients sentation topics and speakers included: and serving as a mentor for Overview of Sjögren’s Syndrome by Robert I. Fox, MD, clinicians and researchers-to- PhD; Management of Dry Eye and Sjögren’s by Stephen be at Cedars-Sinai Medical Cohen, OD; Dry Mouth and Sjögren’s by Ava J. Wu, Center, he has been a leader DDS; Dermatological Issues and Sjögren’s by Daniel N. Clinical Professor of Medicine, in generating needed aware- Cedars-Sinai Medical Center, Sauder, MD; Sleep Disorders and Sjögren’s by H. Kenneth David Geffen School of Medicine ness of Sjögren’s among pro- Fisher, MD; Gastrointestinal Issues of Sjögren’s by Mat- at the University of California, fessionals. He has served as an thew Nichols, MD; Is it Lupus or Sjögren’s? by Daniel J. Los Angeles Associate Member of the SSF continued page 2 t continued page 4 t In This Issue 3 Sexual Intimacy 7 Q&A 11 I Stood Up 13 In Memory and In Honor 15 Breakthrough Bullet 2 June 2012 / The Moisture Seekers “National Patient Conference” continued from page 1 t Wallace, MD; Sjögren’s Research Update by Steven Taylor, Chief Executive Officer, SSF;Testing New Drugs and Future Directions by Philip L. Cohen, MD; SSF Resources Available To You: Presentations; Sjögren’s, Surgery, Hospi- tals, and Medications by Lynn M. Petruzzi, RN, MSN; Dental Tips by JoAnn Founded by Elaine K. Harris in 1983 Snider, RDH; and Tips on Obtaining Disability Benefits from the Social Secu- rity Administration by Katherine M. Hammitt, MA. Board of Directors One of the many highlights of the meeting was our Friday evening Awards Chairman of the Board Lynn M. Petruzzi, RN, MSN Dinner where tributes were paid to volunteers and organizations that have Chairman-Elect worked tirelessly to further the mission of the Sjögren’s Syndrome Founda- S. Lance Forstot, MD tion (the Foundation’s National Award recipients are highlighted later in this Treasurer issue). We were also honored to have Scott MacIntyre, a Top 10 American Kathryn P. McCarren Idol finalist, as our 2012 National Patient Conference Keynote Speaker. As Secretary Fred R. Fernandez the first blind finalist onAmerican Idol, Scott was called “an inspiration to the Estrella Bibbey entire world through your commitment, through your talent” by former judge Michael T. Brennan, DDS, MHS Paula Abdul. Scott is no stranger to charting his own course in life and knows Pamela S. Brown firsthand the challenges of overcoming adversity. His personal journey of forg- Steven E. Carsons, MD Nancy L. Carteron, MD, FACR ing ahead when the world told him to give up inspired all of the conference Stephen Cohen, OD attendees to take control of their health. Peter C. Donshik, MD Kenneth Economou On Friday afternoon, the attendees had the opportunity to hear the “Defy Denise Faustman, MD, PhD the Dry” Panel Discussion about the Awareness Ambassador Program. Last Theresa Lawrence Ford, MD Mary W. McNeil year, in partnership with Daiichi Sankyo, the SSF launched the “Defy the Shari Rood Dry™” campaign – an educational initiative to ignite patient-physician dia- Vidya Sankar, DMD, MHS logue about dryness symptoms – and it has been an outstanding success all Medical & Scientific because of our Ambassadors. More than 300 individuals have volunteered to Advisory Board be Awareness Ambassadors. In fact, many of the conference attendees signed Chairman up to become Ambassadors over the conference weekend! Elaine Alexander, MD, PhD On Saturday morning, attendees were also able to attend our San Diego Richard Brasington, MD Sjögren’s Awareness Walkabout. The Walkabout, a non-competitive family-fun Steven E. Carsons, MD event, took place right outside the San Diego Marriott La Jolla hotel, where Troy E. Daniels, DDS, MS H. Kenneth Fisher, MD, FACP, FCCP participants walked around the lovely courtyard and nearby skywalk. This was Gary Foulks, MD, FACS a great way to Stand Up for Sjögren’s while taking a mid-day stroll before our Philip C. Fox, DDS afternoon speaker presentations. With participation from our conference at- Tara Mardigan, MS, MPH, RD tendees, the San Diego Sjögren’s Walkabout raised nearly $20,000. Austin K. Mircheff, PhD John Daniel Nelson, MD, FACS Sincere thanks to the SSF Education Committee for their valuable assis- Kelly Nichols, OD tance and efforts in planning such an outstanding educational program, and Athena Papas, DMD, PhD we hope to see you all at our next National Patient Conference! n Ann Parke, MD Andres Pinto, DMD Nelson L. Rhodus, DMD, MPH Daniel Small, MD, FACP Neil I. Stahl, MD Pamela Stratton, MD Frederick B. Vivino, MD, FACR Chief Executive Officer Steven Taylor The Moisture Seekers® Newsletter is published by the Sjögren’s Syndrome Foundation Inc., 6707 Democracy e-mail: [email protected] Blvd., Ste 325; Bethesda, MD 20817. Copyright ©2012 Sjögren’s Syndrome Foundation Inc. ISSN 0899-637. www.sjogrens.org DISCLAIMER: The Sjögren’s Syndrome Foundation Inc. in no way endorses any of the medications, treat- ments, or products mentioned in advertisements or articles. This newsletter is for informational purposes only. Readers are advised to discuss any research news, drugs, treatments or products mentioned herein with their health care providers. June 2012 / The Moisture Seekers 3 uch of the advice on how to approach sex when one partner Sexual Intimacy: suffers from fibromyalgia or other chronic pain focuses on how Mto make it less difficult. The reasoning is that because sexual intimacy is essential to healthy relationships, partners should find strate- Transforming gies to overcome existing obstacles and make intimacy more possible. However, this approach misses a key point—closeness with your partner can actually transform your experience of your body as a source of pain Pain into to a source of pleasure. You may be thinking, “Sounds good. But c’mon! I am exhausted and Pleasure ache all over – how sexy is that?” Or you may sometimes feel too over- whelmed with pain to imagine touch as anything but an imposition. by Deborah Barrett, PhD, MSW, LCSW Living well with fibromyalgia, however, often requires doing exactly (Reproduced with permission from the opposite of what you may want in that moment. Consider how you Fibromyalgia & Chronic Pain LIFE experience mornings. It is common for people with fibromyalgia to www.fmcpaware.org) awaken feeling “unrefreshed” and hurting from head to toe. Through trial-and-error, however, most of us learn that staying in bed actually worsens the pain. Instead, we learn to get up, take a hot shower, and/ or engage in other behaviors that relieve our pain, even when we may not “feel like” doing them. Over time, we are more likely to internalize this logic and look forward to getting up and moving around as a way to improve how we feel. Approaching physical closeness may require a similar commitment to act contrary to your initial impulse. As you find that intimacy enhances how you feel, your motivation may increase dramatically. Consider the following to help you seek comfort in your partner’s arms rather than let- ting pain keep your partner at arm’s length. 1. Your body can only tune in to so many things at once. Research has shown that pleasurable acts, as minor as viewing tender images, actually decrease pain perception. Thoughts about and intimacy with someone you love can similarly enhance your well-being. To get started, you might carve out a calm moment to meditate on what you adore about your partner. Then, to maximize the effects of sensual contact, stay mindful of the pleasures you are experiencing (and unmindful of any negative mind chatter). Focus your attention on your senses. We have lots of practice experiencing pain and discomfort—be deliberate in your experimenta- tions to experience your body and exploration of your partner’s body as pleasure centers. 2. Substantial research demonstrates the calming effect of touch. Skin-to-skin contact emits the hormone oxytocin, which promotes a sense of emotional connection, calm, and well-being and reduces the effect of stress (measured by blood pressure and cortisol levels)—all of which can significantly reduce pain.
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