A SOUTHSIDE councillor who spoke recently of his battle to regain his life after being diagnosed with MS was at the opening of a unique new café in the south inner city last week.
Sinn Fein Councillor Mark Ward, who was diagnosed with Multiple Sclerosis in 2005, is now preparing to take part in this year’s Dublin City Marathon.
Mark has recently been attempting to raise awareness around the illness, in particular for young people who have been recently diagnosed.
He was at the opening of the MSunderstood Café on Exchequer Street. The experiential pop-up café opened its doors to give customers a small taste of the daily challenges and debilitating symptoms faced by people living with MS.
The occasion of the opening of the café was also used to highlight the urgent need for improved access to medicine and treatment for the management of the condition.
The Multiple Sclerosis Society of Ireland (MS Ireland), in partnership with the medical research people at Roche, is calling for change and demanding the Government improves the market access system.
Multiple sclerosis (MS) is a disease of the central nervous system, and is estimated to affect 2.3 million people worldwide.
It is a chronic disease in which the immune system abnormally attacks the insulation and support around the nerve cells (myelin sheath) in the brain, spinal cord and optic nerves, causing inflammation and consequent damage.
MS is a leading cause of non-traumatic disability in young people, usually striking between 20 and 40 years of age. There is no cure for MS, but research continues to better understand and treat the disease.
A new website – PatientsDeserveBetter.ie – was also launched last week to help those affected by MS to demand quick and better access to new medicine.
Ava Battles, Chief Executive of MS Ireland said: “We believe that PwMS (People or person with multiple sclerosis) should have access to the right treatment at the right time.
“This may seem like a very basic demand, and one that it would be hard to refuse, but the truth is that this is not the situation for many people in Ireland today.
“By opening the doors to the MSunderstood Café, we hope we have helped customers understand the reality of living with MS, and realise how crucial speedy access to treatment is for PwMS.”
Everything in the MSunderstood Café – including the menu boards, coffee mugs and furniture – was designed to create a challenging experience, giving customers a unique insight into the lives of those living with MS.
Pierre-Alain Delley, General Manager of Roche Ireland, added: “People with MS deserve quick access to medicine, yet in Ireland we face the worst access delays in Western Europe.
“The solution is a system similar to Germany’s where people with MS get access to medicines as soon as they are authorised by the European Commission.
“By working together we can improve the current access system and ensure everyone gets the treatment they need.”
More than 9,000 people are living with MS in Ireland, with thousands more family members affected.
Multiple Sclerosis, meaning ‘many scars’, is the most common neurological disease of young adults in Ireland.
Three times more women than men are diagnosed with MS.
Cllr Ward revealed recently how, in 2005, he thought that his life, as he knew it, was over.
“After years of being hospitalised, misdiagnosed and countless tests I was finally diagnosed with Multiple Sclerosis,” he recalled.
“I remember getting the news and my feelings were a mixture of relief and fear.
“Relief that I knew exactly what I was dealing with but the overriding emotion was fear. Fear for my family and my future.
“But, I started to change my lifestyle. I changed my diet, stopped drinking alcohol and started exercising.
“Gradually things started to improve. I enrolled in a course that led onto college.
“I decided to take part in the marathon to raise awareness for newly diagnosed people with MS,” he added.