International Multiple Sclerosis Conference to Focus on Patients’ Experience

Patricia Silva, PhD avatar

by Patricia Silva, PhD |

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The 4th International MS Patient Summit, which will be held on May 22 in Rome, Italy, will explore feedback from patients who suffer from multiple sclerosis (MS) in an effort to increase knowledge of the disease and, hopefully, improve treatments. Kaz Aston, the conference moderator, is an MS patient herself who was diagnosed with the disease 22 years ago.

Unlike many other events focused on novel MS treatments, the conference in Rome, entitled “Raising standards: The voice of people with MS,” will be focused on MS patients and how their expertise can help treat the disease. “This event is different,” explained Kaz Aston in a press release. “Because it’s all about the patient, and about the ‘expert patient” as a concept — recognizing that MS patients have a lot to bring to the table.”

The conference is expected to bring together representatives from charities and other organizations who support MS patients worldwide. At the event, the latest research discoveries will be featured, as well as new methods to provide patient support through information and therapies for delegates to eventually implement in their own countries. Importantly, among the delegates there are participants who are also MS patients.

“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,” stated Aston, who believes that among MS patients there is a great community spirit and commitment to help each other, instead of just waiting for the medical community to discover new treatments.

“People are keen to know, to share and to exchange stories and experiences about what works for them. 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,” she said. “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.”

Despite the fact that there is currently no cure for the neurological chronic disease, there are several pharmaceutical and non-pharmaceutical treatments that aim to decrease the burden of MS symptoms and improve patients’ quality of life. Since the causes for the development of MS are still a mystery, some treatments are partially experimental. However, patients feel better due to dietary supplements or anti-oxidants that are currently being tried.

“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,” stated the event’s moderator.

The 4th International MS Patient Summit will include five key speakers, with special highlight for the contribution of the British expertise, since three of the five speakers, in addition to Kaz Aston, come from the United Kingdom. The key note speaker will be Sir Nick Partridge, while Vittorio Martinelli and Aliki Vrienniou will address the theme of “Patient rights in research and treatment.” In addition, Mary Baker and Jean Hardiman-Smith will present the topic, “Influencing the direction of healthcare decision-making,” and speak about “The ‘Expert’ Patient.”

“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,” added Aston.