June 15th 2010 is the day I got my official diagnosis of Multiple Sclerosis.
I made a promise to myself that very day that forever more, June 15th would not be a dark day or a day for despair or self pity. It would be a day of celebration. A celebration of the year passed, the achievements recognised and the tough days acknowledged. June 15th would be a celebration of Ciara, not of a diagnosis or of an illness. June 15th so far has consisted of spa days, breaks away, nights out or a box of Lindt chocolates and Netflix.
And June 15th 2019 will be no different. Only that Mr. Jon Bon Jovi will be marking the day with me!
While I make June 15th a celebration for myself, it’s also a day for contemplation, an opportunity to reflect on the world of MS in the year that’s passed. From new research being carried out to new medications approved or the development of advocacy and support groups, there has usually been more opportunities for understanding, acceptance and awareness of this chronic illness.
When I stand in the RDS Arena on June 15th, rocking out with Jon Bon Jovi, of the 18,500 people around me, there will be up to 37 people living with multiple sclerosis. 25 of them will be women.
37 people with the same illness albeit different journeys and experiences.
37 people with hopes, fears, dreams and disappointments.
37 people from the MS Community who will require and benefit from support workers, physiotherapy, symptom management courses, newly diagnosed sessions, respite services and the MS information line.
37 people who wait for the licensing of new disease modifying therapies that will slow their disease progression and improve their quality of life and who wait patiently for a cure on the back of ongoing research and clinical trials.
The Kiss Goodbye to MS Campaign is just what these 37 people and the 8,963 others living with MS in Ireland need to ensure these resources, supports and developments continue.
Ireland’s annual opportunity to help ‘Kiss Goodbye to MS’ will run throughout the month of May with local and national events and activities. The campaign, calls on individuals, workplaces and groups to get creative to fund research and provide services for the 9,000+ people in Ireland with MS.
Join me in the fight to make MS history! Step outside your comfort zone and dare yourself to do something fun, exciting, glamorous, weird or whatever, to raise money for vital research and services for people living with MS in your community and the 37 others in the RDS reliving their youth and rocking out to ‘Living on a Prayer’!