Play Your Part And Run The Flora Women`s Mini Marathon For Lupus
I set up Lupus Group Ireland in November 2011 as a means of communicating with other patients with this condition. As a newly diagnosed Lupie I went in search of people to talk to from my area or from Ireland at least. When I discovered that there were in fact no active support groups in my area I went about setting up Lupus Group Ireland.
Nothing could have prepared me for the response I received on opening this page. In just 16 weeks the page has received over 160 patrons many of them seeking a more private refuge to discuss issues which is why I set about opening a private group discussion page, which has been open just over 4 weeks with a membership of 36 patients and growing daily.
This Group offers people a way to communicate with others who understand a very complex and lonely condition. Every person in this group is grateful to have the ability to chat whether it be about starting up work again or another trip to the specialist which brought with it some more bad news. This Group is a shoulder for people to lean on when they can no longer stand up on their own.
I realised just how important this support structure had become and because of this I have hired a web designer to set up a web page for Lupus Group Ireland which will offer information, advice and patient to patient support through flash chat and chat forums. We also hope in the future to distribute information packs to patients and families coping with this condition.
As well as offering this much needed support we have also set about an awareness campaign in which we intend to have posters of symptoms in GP’s and Specialist’s offices and leaflets to be handed out to patients on visits to their specialists. Meetings are being held with the Health Service Executive and with the group in this capacity.
It is also very important that we raise awareness for this condition. 1 in 200 people in Ireland suffer with Lupus, you may have a sister, a mother, a friend or a grandparent with this condition and you don’t even know it. Lupus is very much unknown in Ireland, it is vital that this condition is diagnosed early which is why it is important to raise awareness and help people on their journey to a diagnosis.
To continue to provide these services, to establish and maintain the web site and to continue to hold events we will of course need help. This is why we have decided to become a charity running in the Flora Women’s Mini Marathon on 4th June 2012. This is our first ever major event in establishing ourselves in the community. Through this run we hope to raise awareness for our group and also acquire our first set of donations which will allow us to get our website up and running, print off leaflets and posters for GP’s surgeries and Specialists offices and to hold our annual events inviting friends and relatives to different parts of the country for information and support meetings. This event will change the structure of the Group as it will provide us with badly needed initial funds to set up our website, our “hub” for people to contact us and to come for support from other patients.
I have registered to walk in this marathon along with friends and family members of people with Lupus. So please come join us and register online at www.florawomensminimarathon.ie. You can contact me on email@example.com with your details and I will send you out your sponsorship card and organise your Lupus Group Ireland T-shirt for the day.
Every single entrant will make a huge difference to families and patients living with this condition on a daily basis in Ireland.