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Chronic Illness Intervention MS
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Chronic Illness Intervention MS

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

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