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Chronic Illness Intervention MS

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Information about Chronic Illness Intervention MS
Health & Medicine

Published on March 11, 2009

Author: LaurenElissa

Source: slideshare.net

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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

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

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

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

What causes MS? Short answer: We don’t know Appears to be due to a “perfect storm” of several contributing factors:

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)

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

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)

Vitamin D shown to have a protective effect

Twin studies

Norway fishing villages study

Observed latitude gradient

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)

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

Behavioral Risk Factor Smoking Increased risk of developing MS Increased risk of transitioning to more progressive form Source: Ascherio, A. & Munger, K. (2008)

Smoking

Increased risk of developing MS

Increased risk of transitioning to more progressive form

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

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!

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

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

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

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.

Occupational, speech, physical and/or mental therapy

Pacing

Symptom diary

Support groups

Ambulatory assistive devices

Regular exercise

Cooling therapy

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

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

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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