SUMMER 2006 Keli’s story: returning from weakness and pain Keli Roberts had achieved everything “By this time, I was working com- moving a little bit. Even though I was she’d aimed for and more. She left pletely for myself,” she said. “The just fussing over a bunch of potted the life of a model and actress in thought of having no income was plants, their growth encouraged me.” Australia and Europe to become a fit- devastating. I didn’t know how I was Keli had already adopted a healthy ness instructor in this country. Her going to get through it.” Keli’s mus- diet: “I was used to eating fresh fruit love of hard physical training and cles responded well to prednisone and vegetables, lean meat and fish, teaching were well received by some and she dreamed of regaining a nor- whole grains and low-fat dairy prod- of Hollywood’s most visible celebri- mal life. “All my clients except one ucts,” she said, “so I just kept that ties. Soon she was lead- were understanding and up.” She took a great many warm ing Nicole Kidman, made temporary arrange- baths, began exercising under water, Beverly Johnson, Lauren ments until I could heal,” and walked, slowly at first, then Hutton and Jennifer Gray she said. Along with increasing the distance and speed. in routines designed for improving her strength, Finally, she began riding her bike. “I strength and agility. prednisone made her slowly came back,” she said. “It was Other celebrities, like dizzy and sick, so she several months, and I didn’t force Cher, Kirsty Alley, avoided the weight gain. anything, but I knew I had to make Jennifer Jason Lee, Susan The medication also spun progress.” Dey and Faye Dunaway, her into a manic episode: Keli’s stature in her profession hired her as their person- “I was in a psych ward was such that she was hired by manu- al trainer. She made a for several days,” she facturers of fitness equipment to train video with Cher and its said. “It may have been a Keli Roberts, DM patient other trainers in the use of new prod- success led to a series of blessing in disguise, as I ucts. This new career focus has sent videos on her own. It seemed like had struggled with highs and lows all her all over the world, and she’s nothing could stop her from living my life.” Once released, shaken by developed many programs to provide the dream she’d had as a young ath- all that had happened to her, she continuing education credits in step lete growing up in Australia. forced herself not to worry so much training, kickboxing, circuit training, and to concentrate on small things She did notice an increasing array sports conditioning, indoor cycling, she could do. of aches and pains. “It seemed pretty dumbbell training, body bar training, normal, given my profession,” Keli “It’s amazing how accomplishing core training, rubber resistance train- recalls. She’d been warned for years one practical thing can make you feel ing and medicine ball training. She’s that her blood tests indicated a great better when you’re sick,” Keli said. written manuals on rubber resistance deal of inflammation but, fueled by “In my case, finding a roommate, training and teaches people with ambition, the sheer love of her cho- though it didn’t solve all my prob- rheumatoid arthritis and fibromyalgia sen field and lots of Aleve, she lems, at least made me feel I was how to use this type of training to worked through the pain. One day in moving towards solutions.” Keli relieve pain and avoid stress on joints 1999, she was no longer able to. “In spent several months recuperating, and muscles. fact, I could hardly move,” she said. finding satisfaction in tiny bits of She’s had to teach herself how to She agreed to the tests her doctor had progress. “I moved as much as I avoid flares. “I still have them,” she been suggesting and, after a biopsy, could, in a gentle way,” she said. A said. “Each time I make a new kick- was diagnosed with polymyositis. small balcony garden flourished boxing video, it seems to trigger a Her symptoms were very severe, under her attention. “I began to take flare.” Then there’s her new sport, including trouble breathing as well as great joy in my gardening efforts,” moving. she said. “At least I was outdoors and See Keli’s story on page 5 Published by: TMA, Inc. TMA advocates for IVIg THE MYOSITIS ASSOCIATION 1233 20th Street, NW, Suite 402 reimbursement, patient registry Washington, DC 20036 Advocacy is a term often used but represented diseases get a dispropor- P: 202-887-0088 little understood. It means being an tionate share of federal research P: 800-821-7356 advocate for your cause and trying to funding and as for those who have F: 202-466-8940 persuade others to your point of myositis “we just want help for peo- Email: [email protected] view. The crisis that has developed ple who desperately need it …. In Web: www.myositis.org for those needing IVIg therapy to the end, it’s about justice and fair- Executive Director: Bob Goldberg treat myositis and other autoimmune ness.” Editors: Theresa Reynolds Curry, Kathryn Spooner diseases has created a great many Through our advocacy efforts and advocates as this crisis has worsened the assistance of persons such as BOARD OF DIRECTORS over the past 18 months. Fabio who can garner media atten- Janet C. Schuler, Chair TMA, along with other autoim- tion, we are working to secure feder- Jay C. Shinn, Vice Chair mune disease organizations, is cur- al funding and create greater aware- Janice Goodell, Vice President rently having a letter circulated in ness of myositis. Richard G. Stevenson Jr., Vice President Congress that would request the Sharon K. Weber, Secretary Secretary of the U. S. Department of Subscribe to IG Living Health and Human Services to Andrea H. Macher, Treasurer IG Living is a magazine for patients declare a public health emergency Sandra Dunphy who use immune globulin products with regard to IVIg reimbursement and their care providers. Keith John Merritt through the Medicare and Medicaid Chester V. Oddis, MD programs. This would restore previ- Regular features include such top- ous rates of reimbursement until ics as product and manufacturer MEDICAL ADVISORY BOARD there was a determination made as to news, resources for healthy living, Richard Barohn, MD, Chair the impact of the reimbursement immune globulin treatment options, reimbursement and clinical trials. 2 Lisa Rider, MD, Vice Chair changes that took place in 2005 and Anthony A. Amato, MD the effects they have had on the IG Living is a community service provided by FFF Enterprises and its Valerie Askanas, MD, PhD availability and distribution of immune globulin products. TMA has specialty pharmacy services division, Walter Bradley, DM, FRCP asked its members to urge their NuFACTOR, free of charge to those Marinos Dalakas, MD Member of Congress to sign onto the living in the United States. Proceeds W. King Engel, MD IVIg “Dear Colleague” letter. For from advertising go to national Michael Harris-Love, PhD further information, contact TMA at patient organizations whose con- Ingrid Lundberg, MD 1-800-821-7356 or stituents receive immune globulin Frederick W. Miller, MD, PhD [email protected]. therapy. Chester V. Oddis, MD TMA is also advocating for fund- To subscribe, visit Lauren Pachman, MD ing from Congress to provide for a www.IGLiving.com; or call 800-843-7477 x1143. Lawrence H. Phillips II, MD myositis patient registry and surveil- lance survey. These will help estab- Ann Marie Reed, MD lish a more accurate picture of the Rup Tandan, MD, FRCP Fabio to speak at Capitol Hill number of those who have myositis, event Victoria P. Werth, MD their demographics, and treatments On September 21, Myositis Robert L. Wortmann, MD being used. Awareness Day, TMA will be hosting STAFF TMA, like many organizations an event on Capitol Hill in Theresa Curry, Communications Manager that represent rare diseases, faces the Washington, DC, to celebrate challenge of getting Congress and Myositis Awareness Day and recog- Bob Goldberg, Executive Director the public to focus on their disease. nize the efforts of those who are Jami Latham, Operations Manager Referencing this challenge, Bob working to increase public knowl- Beverly Posey, Office Assistant Goldberg, TMA’s Executive Director, edge and awareness of the myositis Kathryn Spooner, Programs Manager was quoted in IG Living!, a new pub- at the federal level. A proclamation, lication for those who use IVIg, say- introduced in Congress by MAA Founder: Betty Curry ing that the more common and better See TMA advocates on page 3 ASK THE DOCTOR Rash differs according to skin color TMA often hears from people wanting red-purple or lilac color similar to appears on the face, chest and hands to know why their rash doesn’t look that of the red-purple heliotrope flow- of the Hispanic woman, available free like the photos in the doctor’s office er (a dermatomyositis rash affecting of charge at www.jfponline.com. or the rash of another dermatomyosi- the eyelids is often referred to as the tis patient in their support group. “heliotrope rash”). Sun intensity influences dis- Some members have told us they did- In individuals having racially or ease type n’t even know they had a rash until ethnically determined more heavily Dermatomyositis is more common in their doctor found it. Often, these are pigmented skin such as latitudes with high UV intensity.