Kiss Goodbye to MS
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Transcript of Kiss Goodbye to MS
2015 ROTARY INTERNATIONAL CONVENTION
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2015 ROTARY INTERNATIONAL CONVENTION
RAGMSA
Rotarian Action Group of
Multiple Sclerosis Awareness
www.rotary-rfmsa.org
#ricon15
• The protective covering or insulation of the nerve fibres (mylin) in the central nervous system is damaged and thus nerve impulses to the brain, spine and optic nerve are short circuited.
WHAT IS MS
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• Over 2 million people worldwide are diagnosed with MS
• Multiple Sclerosis can be observed as early as 2 years of age and becomes more frequent after age of 10 years.
HOW MANY AND WHO DOES MS AFFECT
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• Ratio 3:1 women/men
• Mainly young women & men 17/40 years
• The further North & South of equator higher incidence
WHO DOES MS AFFECT
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• Rotarians support in many ways
• MS Fundraisers
• Bike Rides, Mega Swims, Walks, Golf, etc
• MS Research PhD Scholarships
• Health Fair participation
• rotary-msawareness@yahoo groups.com
HOW DO ROTARIANS HELP
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ABEM - Brazilian Association of Multiple Sclerosis
ABEM
The ABEM was founded in 1984.
It is a reference in Latin America in the Multiple Sclerosis treatment.
It is affiliated with the International Federation of Multiple Sclerosis (MSIF)
since 1987.
Dra Liliana Russo
Dra Ana Maria Canzonieri
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ABEM - Brazilian Association of Multiple Sclerosis
MULTIPLE SCLEROSIS
inflammatory
chronicle
demyelinating
autoimmune
progressive
degenerative
central nervous system
non-lethal
crippling
no cure
unknown cause
genetic
susceptibility
environmental
factors
complex
multifaceted
great social
impact
economic
psychic
2.3 milhoões
young person
Caucasian
variable
unpredictable
distribution
space weather
accumulation
cicatrice
disabilities
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ABEM - Brazilian Association of Multiple Sclerosis
Multiple Sclerosis
(Several cicatrices)
Sclerosis in plates
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ABEM - Brazilian Association of Multiple Sclerosis
70-80%
MS Relapsing-Remitting
10-15%
MS Primary Progressive
85%
MS Secondary Progressive MS rogressive Recurrent
<5%
Waubant et al. Science and Medicine. 1997;4:32;
Noseworthy et al. N Engl J Med. 2000;343:938.
PROGRESSION
DISEASE
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NO SPECIFIC MARKER
DX BASED:
IN CLINICAL FEATURES DISSEMINATION T / E EXCLUSION OF OTHER
NEUROLOGICAL DISEASES
ABEM - Brazilian Association of Multiple Sclerosis
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ABEM - Brazilian Association of Multiple Sclerosis
It reduces inflammation
It reduces the damage of the axon
It reduces the clinical exacerbation
It reduces Progression with time
TREATMENT
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ABEM - Brazilian Association of Multiple Sclerosis
The importance of early Treatment of MS
treatment
late
treatment
diagnosis
Failu
re
Disease onset
Time
intervention in the diagnosis
late intervention
natural evolution of the disease
Trapp et al. Curr Opin Neurol. 1999;12:295; Trapp et al. Neuroscientist.
1999;5:48;
Trapp et al. N Engl J Med. 1998;338:278; Jeffery. J Neurol Sci. 2002;197:1;
Cohen et al. J Neuroimmunol. 1999;98:29
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ABEM - Brazilian Association of Multiple Sclerosis
SYMPTOMS
FATIGUE - 65-97%
DEPRESSION - 54%
MUSCLE WEAKNESS -79%
DYSFUNCTION EYE (nystagmus- 55% neurite- 65%)
BLADDER/ INTESTINAL / SEXUAL DYSFUNCTION - 80-96%
PROBLEM-MARCH - 50-80%
SPASTICITY - 40-85%
20YEARS EVOLUTION - 50% WHEELCHAIR
COGNITIVE DEFICITS - 65%
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TREATMENT
ABEM - Brazilian Association of Multiple Sclerosis
DRUGS
Used to modify the natural evolution of the disease
1-Interferon beta 1 A IM
2-Interferon beta 1 A SC
3-Interferon beta 1B
4-Acetato de glatiramer
MITOXANTRONA : MS cases
Progressive with rapid evolution
AZATIOPRINA
CICLOFOSFAMIDA
MICOFELATO DE MODAFINIL
METOTREXATO
5-Natalizumabe Teriflunamida
6-FTY720(Fingolimode) Alemtazumabe
Tecfidera
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" INFORMATION ABOUT GLOBAL EPIDEMIOLOGY AND
AVAILABILITY OF RESOURCES AND SERVICES FOR PERSONS IN
IS SCARCE, FRAGMENTED AND BASED ON HIGH INCOME
COUNTRIES "
ABEM - Brazilian Association of Multiple Sclerosis
THE ATLAS 2013 MS
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EPIDEMIOLOGY IN BRAZIL
ABEM - Brazilian Association of Multiple Sclerosis
CONTINENTAL COUNTRY
LATITUDE - 5016'20''N And 33044'42 ''S
LAST CENSUS IBGE 2010:
HETEROGENEOUS POPULATION
93096 MILLION WHITE
79 782 MILLION BROWN
12908 MILLION BLACK
919 MIL YELLOW
519 MIL INDIGENOUS
NORTHEAST - 62.5% BROWN
SOUTH 79.6% WHITE
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GENETIC (mitochondrial DNA and Y chromosome)
MATERNAL ANCESTRY - MOSTLY AFRICAN
PATERNA - EUROPEAN
PREVALENCE VARY ACCORDING TO REGION:
N AND NE -> SUN EXPOSURE
S - MISCEGENATION LESS / COLDER
ABEM - Brazilian Association of Multiple Sclerosis
EPIDEMIOLOGY IN BRAZIL
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Patient challenges with MS in Brazil
ABEM - Brazilian Association of Multiple Sclerosis
15 / 100 mil POPULATION
?
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GAP REGIONAL;
INEQUALITY QUANTITY, QUALITY AND PROFESSIONAL SUPPLY;
DIAGNOSTIC METHODOLOGY;
MULTIDISCIPLINARY CENTERS;
THERAPEUTIC ACCESS;
INFORMATION;
NATIONAL EPIDEMIOLOGICAL DATA;
LACK OF RESOURCES OF SUPPORTING ORGANIZATIONS TO PATIENTS
ABEM - Brazilian Association of Multiple Sclerosis
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ABEM - Brazilian Association of Multiple Sclerosis
LIVING CENTERS - NEUROREHABILITATION
SPABEM ABEM SCIENCES
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
SEX AGE
BETWEEN
26 A 55 ANOS – 253
324 PATIENTS
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
285 PATIENTS
marital status
Frequency Percent
single 94 18,7
married 143 28,4
separate 44 8,7
widower 4 0,8
Total 285 56,7
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
31,2% WITH 1 YEAR LESS
3,0 – 36 PEOPLE – 7,2%
1,0 – 31 PEOPLE – 6,2%
6,0 – 27 PEOPLE - 5,4%
6,5 – 22 PEOPLE – 4,4 %
Frequency Percent
Valid
Percent
Cumulativ
e Percent
R.R 180 35,8 73,2 73,2
P.P 31 6,2 12,6 85,8
S.P 35 7,0 14,2 100,0
Total 246 48,9 100,0
MS
Valid
N Valid 355
5,57
7,651
0
41
Minimum
Maximum
diagnosis time
Mean
Std. Deviation
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
Frequency Percent
Valid
Percent
Cumulativ
e Percent
1. grau 13 4,7 4,7 4,7
2.grau 88 31,7 31,7 36,3
graduation 174 62,6 62,6 98,9
pós
graduation
3 1,1 1,1 100,0
Total 278 100,0 100,0
education
Valid
religion
frequency percent
Catholic 62 46,6
Protestant 42 31,6
Espirita 15 11,3
Atheist 9 6,8
Buddhist 5 3,8
TOTAL 133
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
339 patients
MSQOL – 54
(Vickrey)
SF – PHYSICAL HEALTH
SM - MENTAL HEALTH
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
PERSONALITY CHARACTERISTICS
Colorful Pyramid Pfister (Villemor - Amaral)
2- higher
concentration of
stiffness
292 patients
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
PERSONALITY CHARACTERISTICS
Colorful Pyramid Pfister (Villemor - Amaral)
RANGE OF STIMULUS
1- GET A LOT OF STIMULUS
2- RECEIVES MODERATELY
3- RECEIVES LITTLE
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
PERSONALITY CHARACTERISTICS
Colorful Pyramid Pfister (Villemor - Amaral)
FREQUENCY OF COLORS
Red - irritability
Green - emotional difficulties
Violet - anxiety
Orange - repression
Yellow - low tolerance for frustration
Brown - low productivity
Gray - defensive
AZ VM VD VI LA AM MA PR BR CI
MEDIA PATIENTS 18,6 16,8 16,1 11,5 8,4 10,3 3,2 4,9 7 2
ADULT MEDIA 18,1 13,6 19,7 8,5 10,8 9,5 4 4,5 8,3 2,9
MEDIA PATIENTS WITH DEPRESSION 14,7 14,9 22,8 7,8 8,5 10,9 4,7 3,5 8,4 4,1
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
PERSONALITY CHARACTERISTICS
Factorial Personality Battery - BFP
1 very low
2- low
3 medium
4 - High
5 - very high depression
223 patients
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
PERSONALITY CHARACTERISTICS
Factorial Personality Battery - BFP
1 very low
2- low
3- medium
4 - High
5 - very high
retraction
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
Cognitive Assessment - attention
(Roff Bricken)
1 below the average
2- average
3- above average
81 patients
Cognitive problem
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SAMPLE CHARACTERIZATION ABEM
ABEM - Brazilian Association of Multiple Sclerosis
Patient challenges with MS in Brazil
SPIRITUALITY OF SCALE
(Pinto C & Pais-Ribeiro JL)
01. My spiritual beliefs give meaning to my life
1 - I do not agree
2 - Agree a little
3 - Agree Enough
4 - Fully Agreement
62 PATIENTS
02. My faith and beliefs give me strength in difficult times
03. I see the future with hope
04. I feel that my life changed for the better
05. I learned to appreciate the little things in life
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ABEM - Brazilian Association of Multiple Sclerosis
The challenges of ABEM in Brazil
EPIDEMIOLOGIC GLOBAL STUDIES;
CONTINUING EDUCATION FOR QUALIFY HEALTH
PROFESSIONALS;
INFORM THE POPULATION;
DEVELOP CENTERS MULTIDISCIPLINARY;
SEARCH SUBSIDIES FOR SCIENTIFIC RESEARCH
PROJECTS IN BRAZIL AND WITH MULTICENTER.
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ABEM PROJECTS
ABEM - Brazilian Association of Multiple Sclerosis
1 - EPIDEMIOLOGICAL SEARCH ALL STATES OF BRAZIL;
2- SUPPORT OF CORE BUSINESS DEVELOPMENT FOR HIRING PEOPLE WITH
DISABILITIES;
3- PRODUCING BOOKS
4- DEVELOPING GUIDANCE ON LINE PSYCHOLOGY AND PHYSIOTHERAPY
5- RESEARCH PROJECTS DEVELOPMENT MULTICENTER.
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• Rotarians, find your nearest MS Chapter
• Decide how Rotary can Help?
• Fundraise for an MS Research Project
• Work together for success
• Join RAGMSA -help and share
HOW CAN YOU HELP?