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Chronic Illness Interventions:
Multiple SclerosisLauren Hansen
[email protected] 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 coursehttp://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!
TreatmentPharmaceutical
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
TreatmentsPharmaceutical
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
TreatmentsNonpharmaceutical
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.
TreatmentsOn 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