Two important stakeholders in the field of MS and brain disorders offer their in-depth views on this topic.
Maggie Alexander is chief executive of the European Multiple Sclerosis Platform (EMSP), an umbrella organisation with 39 MS societies from 34 European countries, which advocates equitable treatment and support for people with MS throughout Europe.
Dr Mary Baker is the immediate past president of the European Brain Council (EBC), founded to bring together European organisations with an interest in brain disease, and which includes clinicians, patient organisations, pharmaceutical companies and the biotech industries. Its mission is to improve the quality of life of those affected by brain disease.
EMSP TACKLING UNEMPLOYMENT IN YOUNG PEOPLE WITH MS
Diagnosis of MS in early-adulthood can have significant psychological implications which can lead to missed opportunities at work, affect mental health and family life, and create a loss of financial independence. This can significantly restrict life choices.
“MS is cruel in the way it attacks people at a pivotal period of their lives, when they’re making decisions about education, employment and starting families. It hits young people hard,” says Ms Alexander.
One major impact on people living with MS is the unpredictability of the symptoms, which can make permanent full-time employment difficult.
“Unemployment in young people is a major issue. So if you start with another disadvantage in the workplace, such as MS – a long-term condition that may or may not progress – this makes employment even more of a challenge,” she says.
To tackle the unemployment issue, EMSP has launched the Believe and Achieve initiative. The objective is to create work opportunities for young people with MS, through partnerships with businesses across Europe. An initial pilot programme will see ten employers hiring a young person with MS on a year-long paid internship.
Employers can enable people with MS to find and keep jobs if they receive the right support. This means giving employers guidance on recruiting and retaining people with MS, making adjustments to the workplace, and on disability and long-term condition legislation. This fits EMSP’s wider Code of Good Practice in MS and provides a framework to help improve the quality of life for people with MS.
Find out more about EMSP, and its vision and projects at www.emsp.org
EBC ENCOURAGING BRAIN HEALTH EDUCATION AND RESEARCH
The EBC is the body behind the Year of the Brain, which is a programme that will span 2014 and 2015 with the aim to raise awareness and educate people about brain health and the impact of brain disease.
“Raising awareness is particularly important for people living with MS, which affects a younger population and has implications for family life and remaining in the work place,” says Dr Baker, who is president of the Year of the Brain.
Although MS cannot be prevented at the moment, it can be managed in a better way. “We need to focus on the quality of life, on early and accurate diagnosis, access to experienced clinicians and medication, and access to additional therapy and support groups, which can make the patient’s journey easier,” she says.
The Year of the Brain programme has two other goals – striving for more research, and improving access to specialist care for everyone across Europe living with MS and other brain diseases.
“We have to ensure that excellent science is followed by good innovation, delivering societal impact,” says Dr Baker.
The Year of the Brain has support from more than 200 organisations, which will spread the message all over Europe with a series of exhibitions, lectures, conferences, briefings and other events.
HOW MS AFFECTS THE BRAIN
MS is a disease of the brain and the spinal cord. It attacks the covering of nerve cells. This means information travelling along nerve cells may be slowed or interrupted.
The condition affects the brain in two ways. Firstly, there are areas of damage called lesions. Secondly, there is shrinkage of the brain – brain atrophy or brain volume loss – which is not explained by lesions alone.
It is quite normal for a brain to shrink when you get older. However, for people with MS, this may happen more quickly. This acceleration starts early in the disease, even before the first symptoms are noticed. Research shows that the effects of lesions and shrinkage of the brain may result in MS symptoms, for example problems walking or difficulties with concentration.
*Disclaimer: funded through a grant by Novartis Pharma AG