MS Treatment 'Gilenya'
UK Recommends MS Treatment Gilenya, Medicine Remains Currently Unavailable To Patients in Ireland
Research
Website for the Dublin Brain Bank goes live!
Dublin Brain Bank launches new website
The aim of the Dublin Brain Bank is to facilitate an archive of brain tissue, which will help clinical and neuroscience researchers uncover potential cures for neurologically devastating diseases.
Personal Assistants Policy
The Disability Federation of Ireland is looking for feedback on a new policy they are helping to create.
Gilenya Reviewed By European Medicines Agency
Heart problems after the first dose prompt a review
Rare Gene links Vitamin D and MS
Researchers say a variant gene which reduces vitamin D levels could be directly linked to MS.
News article from BBC News Health
A rare genetic variant which causes reduced levels of vitamin D appears to be directly linked to multiple sclerosis, says an Oxford University study.
UK and Canadian scientists identified the mutated gene in 35 parents of a child with MS and, in each case, the child inherited it.
Researchers say this adds weight to suggestions of a link between vitamin D deficiency and MS.
The study is in Annals of Neurology.
Multiple sclerosis is an inflammatory disease of the central nervous system (the brain and spinal cord).
Although the cause of MS is not yet conclusively known, both genetic and environmental factors and their interactions are known to be important.
Oxford University researchers, along with Canadian colleagues at the University of Ottawa, University of British Columbia and McGill University, set out to look for rare genetic changes that could explain strong clustering of MS cases in some families in an existing Canadian study.
They sequenced all the gene-coding regions in the genomes of 43 individuals selected from families with four or more members with MS.
The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being important.
When people inherit two copies of this gene they develop a genetic form of rickets - a disease caused by vitamin D deficiency.
Just one copy of the mutated CYP27B1 gene affects a key enzyme which leads people with it to have lower levels of vitamin D. Read full article here.
Mobility Matters
Campaign launched to highlight importance of Impaired Mobility in Multiple Sclerosis
According to new research released today (Monday, 17th October 2011) 54% of patients with Multiple Sclerosis (MS) are very or extremely affected by decreased mobility in terms of their quality of life. The research was announced at the launch of a new campaign supported by Biogen Idec and MS Ireland entitled ‘Mobility Matters in MS’. Mobility impairment is one of the most physically and emotionally disruptive aspects of MS as it restricts daily life, can result in a loss of independence and can affect a patient’s ability to work.
Over 7,000 people and families live with MS across Ireland. MS is a progressive neurological condition that can affect a person’s health, lifestyle and relationships. While mobility is the main factor affecting patients’ day-to-day living, the condition also greatly impacts other areas of their lives.
- 55% of respondents say they are extremely / very affected by decreased daily living activities
- 54% say they are extremely / very affected by decreased mobility
- 53% claim to be very / extremely affected by decreased sexual function
Speaking at the launch of the campaign today, Ava Battles, Chief Executive of MS Ireland said “MS Ireland welcomes the launch of Biogen Idec’s Mobility Matters in MS campaign. Through our ‘Getting The Balance Right’ programme we have delivered thousands of physiotherapy and exercise related programmes we really understand how important mobility is for people with Multiple Sclerosis. The Mobility Matters in MS website is a valuable resource for patients and healthcare professionals alike, as well as carers, family and friends. The site has a combination of practical tips on managing everyday tasks, as well as advice on what people with MS can do to be as mobile as possible.”
Consultant Neurologist Chris McGuigan at St Vincent’s University Hospital Dublin said, “People with MS can improve their mobility in many ways. Apart from maintaining their general health in terms of diet and exercise, it’s important for them to recognise the areas, which are posing the greatest challenges so that they can be addressed. Common problem areas with mobility include balance, poor vision and impaired sensation in feet and legs. Access to structured physical and occupational therapy, with additional medication where appropriate, can help improve safety when walking.”
To read full press release click here.
Our friend Anne Marie Hayden features in 'Real Lives’ a series of patient videos which provide a first-hand account of the issue of mobility. View here
To support the campaign, a new website, has been developed, providing advice and encouragement to people with MS on how to maintain and increase their mobility.