British expertise will be leading the way at the International MS Patient Summit to be held in Rome on 22 May. And patients’ own expertise will be top of the conference agenda.
Multiple Sclerosis (MS) campaigner Kaz Aston has been named as conference Moderator, and three of the five speakers will be from the United Kingdom.
Multiple sclerosis is a neurological condition that affects around 100,000 people in the UK. Most people are diagnosed between the ages of 20-40, but it can affect younger and older people too. Roughly three times as many women have MS as men.
Emphasis of the Rome conference will be on MS patients and the expertise that they can bring to treating the disease. ‘This event is different.’ Says Kaz Aston, ‘because it’s all about the patient, and about the “expert patient” as a concept - recognising that MS patients have a lot to bring to the table.’
‘Because MS patients include many younger people, they tend to be quite active, and keen to talk and share, especially over social media. So there’s a lot of new ideas coming out about patients taking some responsibilities for themselves. This conference is all about the role of the patient in treatment.’
The conference will be attended by charities and organisations providing support for people affected by MS from around the world. Aim of the summit is to share the latest research findings, and strategies to support patients with information and treatments that delegates can take back to their countries. Some of the delegates attending will themselves have MS.
Aston says that there is a strong sense of community among MS sufferers and a willingness to come together to help each other, rather than relying solely on the medical community for treatment. ‘People are keen to know, to share and to exchange stories and experiences about what works for them’ she says. ‘And it’s not always about trying to treat the MS directly, it can also be about the things that MS generates in your life - so there are work and lifestyle issues as well which people with MS want to talk about.’
‘Even something as simple as changes in weather can affect people - increases in temperature can cause a lot of extra problems which can be alleviated if you anticipate them and know how best to respond.’
Currently there is a range of treatments including both pharmaceutical and non-pharmaceutical therapies, but because the precise cause of MS remains unknown, treatment is to some extent experimental. There are dietary supplements that are being tried and also anti-oxidants, which seem to be promising.
Says Kaz Aston, ‘Rome will be about engaging with people with MS, to help develop support services for them. Some events like this can be a little academic - but what people suffering from MS want to know is: what does this mean for me? Our hope is that the conference will bring greater clarity and greater involvement for patients.’
‘I have lived with MS for the last 22 years and, although I’ve had to battle my way through some tough attacks of the disease in the past, I’m always inspired by the experiences I’ve had and the people I’ve met along the way. Over the last couple of years, I’ve developed a real passion for drag racing, sailing, radio & golf – and it helps me to raise awareness for Multiple Sclerosis, as well as being a great way of fundraising and spreading the word about the condition and how it can be tackled.’
About The 4th International MS Patient Summit in Rome
Date: Friday 22nd of May 2015
Theme: Raising standards: The voice of people with MS
Event hashtag: #thinkMS
* Patient rights in research and treatment - Dr Vittorio Martinelli (It), Aliki Vrienniou (Gr)
* Influencing the direction of healthcare decision-making - Mary Baker (UK)
* The ‘Expert’ Patient - Jean Hardiman-Smith (UK)
* Key note speaker Sir Nick Partridge (UK)
* Conference moderator- Kaz Aston (UK)
About Kaz Aston
Kaz Aston was diagnosed with MS 22 years ago. She is an active global campaigner on MS and the author of the ‘MS Clear Guide’ with supporting websites and social media platforms. Through the MS Clear Guide, Kaz receives thousands of positive testimonials from readers or people affected by MS via social media and email. As an editor of the ‘In Focus’ MS Patient Magazine for last 7 years Kaz also supports, UK and International MS organisations and charities with fundraising and public relations.
As a Community Specialist Practitioner registered for more than 20 years, Kaz currently works with Digital Medicine Software Development, the UK’s largest MS Centre based in London, Nurses and the Royal College of Nursing for MS education with Parliamentary events and conferences. Kaz also supports international businesses, Diplomatic services and Rotary International (with 1.2 million clubs globally) with humanitarian aid projects.
Kaz’s Really Clear Guide to Multiple Sclerosis is here - http://www.kazaston.com/clear-guide
For further information contact
Kaz Aston Tel: +44 (0)7745 557032
For images of Kaz Aston, visit http://www.kazaston.com
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