kiss goodbye to ms

2015 ROTARY INTERNATIONAL CONVENTION

Complete session evaluation and

download session resources with the

convention mobile app!

https://guidebook.com/app/rotary

2015 ROTARY INTERNATIONAL CONVENTION

RAGMSA

Rotarian Action Group of

Multiple Sclerosis Awareness

www.rotary-rfmsa.org

http://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

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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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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Local MS Presenter?


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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



SEX AGE

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

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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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

kiss goodbye to ms

Government & Nonprofit

ms multiple sclerosis

ms affect

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multiple sclerosis treatment

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