Barcelona 2015

Who am I?

Born in Johannesburg Matriculated at Hyde Park HighDegree in Marketing and International

Event Management

Travelled and worked around the world Now live in Cape Town

Who am I?• In October 2011 I was

diagnosed with MS. • Initially I received

treatment with Betaferon. (an injection every second day)

• In 10 June 2015 changed to GILENYA (Fingolimod) (a pill every day).

MS has changed my life, but: “I despair at the type of person that wallows in self-pity but I also disdain at one that is overly enthusiastic. Yes, life must go on but we cannot ignore that life has changed and cannot be taken for granted”.

Volunteering for the NSRI

Volunteering at SHINE

Organising Fund Raiser: Swim for MS

MS Barcelona 2015 and Cemcat

• This annual meeting is organised by the ECTRIMS = European Community for Treatment and Research in Multiple Sclerosis and

• Cemcat = El Centre d'Esclerosi Múltiple de Catalunya (Centre for Multiple Sclerosis in Catalonia).

MS Barcelona 2015 and Cemcat

Organisers and Sponsors

ECTRIMS video available onhttps://www.youtube.com/watch?v=7Q1pqUc6CL0

Topics

• Making Treatment Decisions – Dr Gavin Giovannoni, Professor of Neurology at the Centre for Neuroscience and Trauma at the Blizard Institute

• Making Lifestyle Decisions - Dr. Eva Havrdová, neurologist and professor at Charles University in Prague and member of MSIF’s International Medical & Scientific Board

• Primary Progressive MS - Professor Alan Thompson, Neurologist and Dean of the Faculty of Brain Sciences UCL London

• Oceans of Hope

MS Tube Map

Treatment Thinking Version 1

GP

MS’er

Neurologist

Neurorehab

Nurse Neurologist

MS’er

Neurorehab

Nurse

GP

Nurse

MS’er

Neurologist

Neurorehab

GP

Treatment Thinking Version 2

MS’er

Neurologist

Nero-rehab

Nurse

GP

Continence Advisor

Ophthalmology

Physio

OT

Speech

Psychology

Podiatry

Neurosurgery

Psychiatry

Neuro–Surgery

Expert Patient

When acute disease was the primary cause of illness, patients were generally inexperienced and passive recipients of medical care. NOW that chronic illness has become a principal medical problem, the patient MUST become a co-partner in the process.

“patient participation in treatment is the greatest drug of the century”.

Are you sure you have MS?• ADEM• Ageing• Behcet’s syndrome• Cerebrovascular disease• Decompression sickness• Fat embolism• HIV encephalitis• HTLV1 associated

myelopathy• Hydrocephalus• Irradiation

• Leukodystrophies• Migraine• Mitochondrial

encephalopathy• MND• Neurosarcoidosis• Phenylketonuria• PML• SSPE• SLE/APL• Trauma

Lifestyle and Attitude

• Motivation is the key!• Patients who promote their physical and

mental health have a lower risk of acquiring disabilities.

Use It or Lose It!

Physical

Mental

Emotional

Spiritual

Primary Progressive MS• Focus of presentation on progressive MS and the need

to make it a priority area for research as there are still no affective treatments available.

• Trials and research - slow the progression of this type of MS.

• RRMS – 12 treatments• PPMS - 0

• New PPMS treatment announce at conference: Ocrelizumab

CEMCAT• Cemcat awarded “Best in Class” in 2014 for

best service to Multiple Sclerosis.

One-Stop-MS-Shop• Neurologists• MS nurses• Psychotherapy• Physiotherapy• Speech therapy• Art therapy• Social workers• Database• Media meetings• Research, teaching and clinical care

State of the Art

Oceans of Hope

Oceans of Hope

OOH video available on :https://www.youtube.com/watch?v=XLlRI14kzyU

Thank You!