The tremendous passion and purpose for marriage equality that poured out across Ireland last week was invigorating. It’s with this same passion and purpose I ask people to join the 2.3 million people across the world and the 8,000 plus people in Ireland with Multiple Sclerosis as we celebrate World MS Day.
There is a young woman being diagnosed today. She’s probably in her late 20s, her prime adult years. She’s told about the damage to her brain, her spine and the central nervous system. There is no cure. Because MS affects the central nervous system, the system that controls everything, MS can cause a huge variety of problems including fatigue, loss of balance, cognitive dysfunction, visual difficulties, depression and other symptoms.
MS is a chronic, neurological condition that fluctuates, so she’ll learn from healthcare practitioners what it might mean long-term but there are no certainties. She’ll search out information online, look to family and friends for support and turn to the groups and organisation that understand what it means to live with a life-long condition. Gradually, she’ll build her resilience and learn how to manage her condition and thrive again. But it is only because there are people she can trust to support her through the worst of days that she will have a chance to have the best of days again.
People with MS are the tip of the iceberg when it comes to brain conditions- there are more than 700,000 people in Ireland with neurological conditions (including Parkinson’s, Huntington’s, Motor Neuron Disease, chronic pain, acquired brain injury, and others) supported by different organisations. The Scheme to Support National Organisations in the Community and Voluntary Sector (SSNO) provides many of these organisations with money to provide services. All neurological organisations that applied, were denied funding (http://www.nai.ie/assets/40/8B140F05-B440-0D0C-D523AFDE2E761C5B_document/SSNO_Briefing_Document_Final_March_11_2015.pdf). The Neurological Alliance of Ireland represents those 700,000 people but for the past eight budgets, not for profit organisations that provide the care to people with neurological conditions have had their funding decimated.
We are people with decades to live and huge lives and careers ahead. By investing in neurological services we can ensure that people can be supported to stay well and continue to thrive. We can make the investment and change the course of people’s lives.
It was eight years ago this month when the bottom fell out of my world, the universe gave me a massive shake and I looked around for some sort of guidance in all the madness. Funding needs to be restored so people in Ireland with brain conditions are supported through the worst days of their lives. This matters because it is our brain that makes us who we are and I hope those who make the decisions reconsider. On this World MS Day, I’d like to thank the people across the world who have shown me, no matter how bad things are, l am Stronger than MS.