Chronic Illness Intervention MS
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Chronic Illness Intervention MS

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Chronic Illness Intervention MS Chronic Illness Intervention MS Presentation Transcript

  • 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.
  • 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
  • Disease course
  • 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
  • What causes MS?
    • Short answer: We don’t know
    • Appears to be due to a “perfect storm” of several contributing factors:
  • 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)
  • 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)
  • 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)
  • Behavioral Risk Factor
    • Smoking
      • Increased risk of developing MS
      • Increased risk of transitioning to more progressive form
    Source: Ascherio, A. & Munger, K. (2008)
  • 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
  • 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!
  • 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
  • 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
  • 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.
  • 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
  • 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