Chronic Illness Intervention MS

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  • Chronic Illness Intervention MS

    1. 1. Chronic Illness Interventions: Multiple Sclerosis Lauren Hansen [email_address] Winter 2009 This work is licensed under the Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 Unported License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/3.0/ or send a letter to Creative Commons, 171 Second Street, Suite 300, San Francisco, California, 94105, USA.
    2. 2. What is MS? <ul><li>Autoimmune disease </li></ul><ul><li>T cells attack protective myelin coating surrounding axons in CNS (brain, spinal cord, optic nerve) </li></ul><ul><li>Leave behind scars (scleroses) or “black holes” </li></ul><ul><li>Scar tissue disrupts signals from brain, symptoms result </li></ul><ul><li>Extremely unpredictable course </li></ul>http://training.seer.cancer.gov/module_bbt
    3. 3. Disease course
    4. 4. Who gets MS? <ul><li>2.5 million people worldwide; 400,000 in US </li></ul><ul><ul><li>200 people diagnosed each week in US </li></ul></ul><ul><li>Most common in Caucasians of Northern European ancestry </li></ul><ul><ul><li>Also present in those of African, Asian and Hispanic ethnicities </li></ul></ul><ul><ul><li>Not found in Inuit, Aborigine or Maori populations </li></ul></ul>Source: National Multiple Sclerosis Society
    5. 5. What causes MS? <ul><li>Short answer: We don’t know </li></ul><ul><li>Appears to be due to a “perfect storm” of several contributing factors: </li></ul>
    6. 6. Genetic Factors <ul><li>Female, Northern European Caucasians </li></ul><ul><li>Not strictly a genetic disease, but </li></ul><ul><ul><li>Risk in general population = 1 in 750 </li></ul></ul><ul><ul><li>Risk if close relative affected = 1 in 40 </li></ul></ul><ul><ul><li>Risk if identical twin is affected = 1 in 25 </li></ul></ul><ul><li>To date, 50% of genetic factors of MS have been identified </li></ul>Sources: National MS Society; Gregory, G., Schmidt, S., Seth, P. et al. (2007)
    7. 7. Environmental Factors <ul><li>Vitamin D shown to have a protective effect </li></ul><ul><ul><li>Twin studies </li></ul></ul><ul><ul><li>Norway fishing villages study </li></ul></ul><ul><ul><li>Observed latitude gradient </li></ul></ul>Sources: Islam, T., Gauderman, W.J., Cozen, W. & Mack, T.M. (2007); Ascherio & Munger (2008)
    8. 8. Infectious agents <ul><li>Epstein-Barr resulting in mononeucleosis = 2 to 3 times increased risk </li></ul><ul><li>Human herpes virus 6 </li></ul><ul><ul><li>Implicated in many autoimmune disorders but, </li></ul></ul><ul><ul><li>Associated more (and at greater levels) in those with MS </li></ul></ul>Sources: Ascherio, A. & Munger, K. (2008); Virtanen, J.O., Farkkila, M., Multanen, J. et al. (2007)
    9. 9. Behavioral Risk Factor <ul><li>Smoking </li></ul><ul><ul><li>Increased risk of developing MS </li></ul></ul><ul><ul><li>Increased risk of transitioning to more progressive form </li></ul></ul>Source: Ascherio, A. & Munger, K. (2008)
    10. 10. Onset <ul><li>Usually diagnosed between the ages of 20 and 50 </li></ul><ul><ul><li>Later onset associated with more progressive forms </li></ul></ul><ul><ul><li>Increased attention to pediatric MS </li></ul></ul><ul><li>Difficult to diagnose </li></ul><ul><ul><li>No definitive test; symptoms are so varied </li></ul></ul><ul><ul><li>Lack of knowledge among medical personnel </li></ul></ul><ul><li>Symptoms often go undiagnosed for many years </li></ul>
    11. 11. Symptoms (Not exhaustive) <ul><li>Invisible </li></ul><ul><li>(“But you look so good…”) </li></ul><ul><li>Fatigue </li></ul><ul><li>Numbness </li></ul><ul><li>Vision problem </li></ul><ul><li>Dizziness/vertigo </li></ul><ul><li>Visible </li></ul><ul><li>Balance, walking problems </li></ul><ul><li>Coordination issues </li></ul><ul><li>Tremor </li></ul><ul><li>Speech disorders </li></ul><ul><li>Paralysis </li></ul><ul><li>Pain </li></ul><ul><li>Cognitive Difficulty </li></ul><ul><li>Depression/Emotional changes </li></ul><ul><li>Bladder/Bowel dysfunction </li></ul>Symptoms vary over time and from person to person: no two people are alike!
    12. 12. Treatment Pharmaceutical <ul><li>Disease-modifying : Increase time between exacerbations </li></ul><ul><ul><li>Interferon-based </li></ul></ul><ul><ul><ul><li>Injections given daily, 3 times a week, or weekly </li></ul></ul></ul><ul><ul><ul><li>Not always effective or tolerated </li></ul></ul></ul><ul><ul><ul><li>Extremely expensive </li></ul></ul></ul><ul><ul><li>Tysabri and Novantrone </li></ul></ul><ul><ul><ul><li>IV treatments </li></ul></ul></ul><ul><ul><ul><li>Potential deadly side-effects </li></ul></ul></ul>
    13. 13. Treatments Pharmaceutical <ul><li>Corticosteroids </li></ul><ul><ul><li>Given intravenously to minimize relapse symptoms </li></ul></ul><ul><ul><li>Side effects </li></ul></ul><ul><li>Medications to help with spasticity, incontinence, depression, fatigue </li></ul><ul><li>Regular MRIs and appointments with neurologist to track progression </li></ul>
    14. 14. Treatments Nonpharmaceutical <ul><li>Occupational, speech, physical and/or mental therapy </li></ul><ul><li>Pacing </li></ul><ul><li>Symptom diary </li></ul><ul><li>Support groups </li></ul><ul><li>Ambulatory assistive devices </li></ul><ul><li>Regular exercise </li></ul><ul><li>Cooling therapy </li></ul>Due to the unpredictable nature and extreme variability of the disease, treatments must be tailored to each individual’s needs. Self management becomes essential.
    15. 15. Treatments On the horizon <ul><li>Several oral therapies in various trial stages </li></ul><ul><li>Myelin repair and regeneration </li></ul><ul><ul><li>Stem cell therapies </li></ul></ul><ul><li>Continued work to determine remaining genetic risk factors </li></ul>
    16. 16. Final thoughts <ul><li>MS is rarely fatal and usually does not shorten life </li></ul><ul><li>Extremely unpredictable in its course (both day-to-day and lifespan) </li></ul><ul><ul><li>Can lead to emotional distress and affect one’s work and relationships </li></ul></ul><ul><li>Adequate insurance coverage/job protection are ongoing problems </li></ul><ul><li>Even with treatment, most individuals with MS live with daily symptoms </li></ul><ul><ul><li>Importance of emotional health programs and preventative steps </li></ul></ul><ul><li>The burden of the disease continues to fall squarely on the shoulders of the individuals and loved ones </li></ul>

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