Rotarians Support MS Awareness and Research

2015 ROTARY INTERNATIONAL CONVENTION
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download session resources with the
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2015 ROTARY INTERNATIONAL CONVENTION
RAGMSA
Rotarian Action Group of
Multiple Sclerosis Awareness
www.rotary-rfmsa.org

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• 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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Rotarians organizing events to raise MS Awareness and Funds

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Rotarians organising MS Awareness events-MS Global Dinner

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Join in MS Chapter Walks and Runs

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Rotarians Cooking for MS Chapter Bike Riders, MS Walkers & Fun Runners

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Rotarians Organising Bike Rides

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Birmingham Convention Promoting MS Awareness

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New Orleans Convention Promoting MS Awareness

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Portugal Convention Promoting MS Awareness

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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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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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Multiple Sclerosis
(Several cicatrices)
Sclerosis in plates

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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

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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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The importance of early Treatment of MS
treatment
late
treatment
diagnosis
Failure
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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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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Local MS Presenter?

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TREATMENT
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 "
THE ATLAS 2013 MS

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EPIDEMIOLOGY IN BRAZIL
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
EPIDEMIOLOGY IN BRAZIL

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Patient challenges with MS in Brazil
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

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LIVING CENTERS - NEUROREHABILITATION
SPABEM ABEM SCIENCES

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SAMPLE CHARACTERIZATION ABEM
SEXAGE
BETWEEN
26 A 55 ANOS – 253
324 PATIENTS

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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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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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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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339 patients
MSQOL – 54
(Vickrey)
SF – PHYSICAL HEALTH
SM - MENTAL HEALTH

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PERSONALITY CHARACTERISTICS
Colorful Pyramid Pfister (Villemor - Amaral)
2- higher
concentration of
stiffness
292 patients

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RANGE OF STIMULUS
1- GET A LOT OF STIMULUS
2- RECEIVES MODERATELY
3- RECEIVES LITTLE

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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
MEDIAPATIENTS 18,6 16,8 16,1 11,5 8,4 10,3 3,2 4,9 7 2
ADULTMEDIA 18,1 13,6 19,7 8,5 10,8 9,5 4 4,5 8,3 2,9
MEDIAPATIENTS 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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Factorial Personality Battery - BFP
1 very low
2- low
3 medium
4 - High
5 - very high depression
223 patients

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Factorial Personality Battery - BFP
1 very low
2- low
3- medium
4 - High
5 - very high
retraction

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Cognitive Assessment - attention
(Roff Bricken)
1 below the average
2- average
3- above average
81 patients
Cognitive problem

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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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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
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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Thank
you

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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?

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Complete session evaluation and download
session resources with the convention
mobile app!
https://guidebook.com/app/rotary

Rotarians Support MS Awareness and Research

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