Chronic Illness Interventions:

Multiple SclerosisLauren Hansen

hansenla@gmail.comWinter 2009

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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