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MS Barcelona 2015
- 2. Who am I? Born in Johannesburg Matriculated at Hyde Park High Degree in Marketing and International Event Management Travelled and worked around the world Now live in Cape Town
- 3. 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
- 4. MS Barcelona 2015 and Cemcat
- 5. • 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
- 7. ECTRIMS video available on https://www.youtube.com/watch?v=7Q1pqUc6CL0
- 9. 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
- 10. MS Tube Map
- 11. Treatment Thinking Version 1 GP MS’er Neurologist Neurorehab Nurse Neurologist MS’er Neurorehab Nurse GP Nurse MS’er Neurologist Neurorehab GP
- 12. Treatment Thinking Version 2 MS’er Neurologi st Nero- rehab Nurse GP Continenc e Advisor Ophthalm ology Physio OT Speech Psycholog y Podiatry Neurosur gery Psychiatry Neuro– Surgery
- 13. 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”.
- 14. 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
- 15. Lifestyle and Attitude • Motivation is the key! • Patients who promote their physical and mental health have a lower risk of acquiring disabilities.
- 16. Use It or Lose It!
- 17. 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
- 18. CEMCAT • Cemcat awarded “Best in Class” in 2014 for best service to Multiple Sclerosis.
- 19. One-Stop-MS-Shop • Neurologists • MS nurses • Psychotherapy • Physiotherapy • Speech therapy • Art therapy • Social workers • Database • Media meetings • Research, teaching and clinical care
- 20. State of the Art
- 21. Oceans of Hope
- 22. Oceans of Hope OOH video available on : https://www.youtube.com/watch?v=XLlRI14kzyU
- 23. Thank You!
Editor's Notes
- DISCLAIMER: I do not work for any Pharmaceutical/medical company or even MSSA (Multiple Sclerosis South Africa). I am a person with MS. I have an interest in MS from a personal level and for the greater collective of MS’ers in South Africa.
- I was born and grew up in JHB. I had all my schooling in JHB. I achieved a Bcom Marketing degree and later a Masters in Event Management. I have been lucky enough to have lived and worked all over the world. I sent the better half of 8 years in the UK. However, I now call Cape Town home. I love it here!
- I was diagnosed in 2011. I went on to Betaferon in 2012. In 2015 I switched to Gilenya (Fingolimod) due to a new lesion caught on the MRI. I run a project called “Swim for MS” to create awareness and funds for MSSA as well as promote swimming for MS’ers. I volunteer for the National Sea Rescue. I look after the administration and training coordination at the Bakoven station. I also help out on their WaterWise program that teaches less privileged youth about water safety. I also volunteer with Shine. Focusing on improving the reading and writing skills of young learners who’s second language is English.
- I was sent to the conference by Novartis. The Pharmaceutical company that provides my medication. The trip was incredible, jaw dropping and inspirational.
- The conference was hosted by ECTRIMS and I was lucky enough to have a tour of the specialist MS centre in Barcelona, Cemcat.
- The conference is organized and supported by a number of medical companies and MS organizations.
- These were the topics discussed in the conference.
- This is a 1-page-view of MS. Designed by Dr Giovanni and based on the London Tube system. The image is available on this BartsMS Blog.
- He talked about moving from the treatment model where the MS’er is a passive recipient of care…
- …to MS’ers being at the centre of treatment. Nobody knows your body better than you. It is vital to keep channels of communication open and flowing between your team of professionals.
- Make sure you get a proper diagnosis from a Neurologist. MRI Lumber Puncture Bloods There have been instances (not many) where conditionals have been misdiagnosed as MS. In essence they are “MS mimics”.
- Attitude is key to your treatment and management of MS. Many MS’ers suffer with depression. It is important to have this treated by a psychologist. The psychologist will assist you in understanding and offer you tools for your process of grief.
- Make sure you care for your physical, mental, emotional and spiritual health. This is a journey and a process. One thing at a time. It is also very important to do cognitive exercises (not just physical exercise). You don’t use it, you lose it!
- The next speaker spoke about the urgency of work for PPMS (Primary Progressive MS). At the time of the conference there was NO treatment for PPMS. A few days later the first ever treatment for PPMS was announced. RRMS = 12 treatments PPMS = 1 treatment
- My visit to Cemcat. The Centre for MS in Catalonia. This picture is the team of Dr’s and professionals at the centre who offer care and rehabilitation to persons with MS.
- It is truly inspiring! 3 floors dedicated to the care, rehabilitation, research and teaching by professionals for those with MS, their families and those wanting to specialise in MS. What I found quite interesting was the use of a database for all the patients with a complete history of activities and treatments. The MS’er is treated by the team at Cemcat and doest just rely on 1 Neurologist. There is open knowledge sharing. Once a week the Neurologists will have a media conference (Skype session) with outside specialists to discuss difficult cases. But best of all… The services at the centre are paid for by the Government!
- These are just a few pictures of the facilities at Cemcat. A comfortable infusion room so you don’t have to sit in hospital to receive your medication or treatment. This room is also used for medical trials. The adaptive kitchen where an Occupational Therapist will show you how you can adapt you kitchen to make living with MS easier. The temperature controlled physiotherapy room full of equipment for rehabilitation and general exercise for the MS’ers.
- The Sailing Sclerosis project, Oceans of Hope (OOH), will change the perception of multiple sclerosis by showing what is possible when people with a chronic disease are empowered to conquer their individual challenges, by engaging those whose lives are touched by MS and developing networks as a foundation for life changing behaviours. This project aims to broaden the horizons of those who perceive themselves as trapped by their condition, either physically or mentally, and inspire them to realise that they still have potential to achieve great things.