1. Living Life to its Fullest While Managing Systemic Lupus Erythematosus Presented by: Gina De Vos, Michael Kuo, & Dan Szmutko U of M Occupational Therapy students, Class of 2003 February 14, 2002

2. Series Overview n Information & resources n Exploring personal needs & hints for everyday living n Lupus in Motion- physical activities & their importance n Caring & Sharing - explore how we are feeling n Nutrition & Home management issues. n Lifestyle issues- includes ways to conserve energy, and relaxation & stress relief ideas n Explore personal relationships -review how our journaling exercise - topics for 8 & 10 n Explore lupus in a more in depth way n Available ongoing support groups & how you can set- up your own coffee group

3. Knowledge & Resources: What do I need to know? n Discuss Lupus facts & give a handout on Preventing a Lupus Flare n Coffee break n Computer lab n Resource List handout

4. Why the computer n One goal of this series is to provide you with ways to find information on your own n Computer lab –CD-ROM Living Life to its Fullest with SLE –Time to explore n Additional Handouts –Preventing a Lupus Flare –Internet Resource Reliability Checklist –Resource List

5. Describing Lupus n What is it? n Who gets it? n What does SLE stand for?

6. Systemic Lupus Erythematosus is n Chronic (often life-long) autoimmune disease n Autoimmune: a person’s own cells that are attacking his or her own tissues n Widespread sites, but it most often is in the skin, joints, blood, and kidneys n Mild to severe symptoms n SLE afflicts mostly women

7. Why the name SLE? n S is for Systemic - effects whole body n L- Lupus- “wolf’ n E- Erythematosus is which is Greek for red (the rash)

8. Common issues n Fatigue n Joint pain n Recurrent damage to vessels through out the body n Emotional & Psychological well-being

9. Causes of lupus n Autoimmune –antibodies n Genetics –greater number from certain ethnic backgrounds –twin studies n Role of Environmental Stresses –sunlight, stress, chemicals,viruses n Role of hormones (90% woman)

10. More information n Lupus Canada estimates that 50,000 people have Lupus n The Arthritis Society states 1:2000 or 15,000 Canadians have lupus n 80-90% are women n Most people now have fairly well controlled illness n Knowledge & Management of lupus is the key

11. Common everyday issues n Challenges in bathing, grooming or dressing n Importance of adequate footwear n Often can continue to work- P/T n Techniques for energy conservation, prioritizing, stress reduction n Change in roles such as within a family n Sunlight restrictions can impact both leisure and productive areas n Less social activity due to fatigue or less physical ability

12. Signs & Symptoms of a flare-up n Increased Fatigue n New or higher fever n Increased pain n Worsening or development of a rash n Upset stomach n Headache or dizziness n Development of symptoms that are new to you n Handout - Preventing a lupus Flare (NIAMS, 1999)

13. Treatment n Medications to control symptoms n Rest both physical & emotional n Exercises for strength, endurance and range of motion n Avoid triggers such as sunlight n Healthy diet n Treat any infection/illness early n Planing Pregnancy

14. Series goals as part of your treatment plan n Personal goals/needs & helpful everyday hints n Exercise & activity n Feelings & emotional issues n Lifestyle issues n Nutrition & household management n Medical issues n Energy conservation, stress relief & relaxation techniques n Topics of choice related to this particular group’s interests and needs

15. Moving to Computer Lab n Chance to see how to access information n Help available as needed n CD-ROM Living Life to its Fullest with SLE- yours to keep n Hyperlink looks like http://www.lupus.org n Handouts: –Resource List –Preventing a Lupus Flare