Tuesday, 23 April 2013

World Meningitis Day 2013

Meningitis is a disease that can make you feel powerless. You watch your loved one fight for their life and holding their hand is the only thing you can do. World Meningitis Day is a day when you actually can do something - you can try and save others from the same fate.

On the 24th April meningitis organizations around the world are uniting to raise awareness of this disease, increase awareness of the signs and symptoms to watch for, appeal to their governments to provide scheduled vaccinations for the strains of meningitis we have discovered vaccines for and to  push for further research to hopefully find more vaccines to halt the strains we can't vaccinate for yet.

A lot of countries have meningitis organizations usually formed by distraught parents who have lost their children or who now live with children who have life long disabilities because of their brush with death.  Most of these organizations have come together under the umbrella of CoMO - the Confederations of Meningitis Organizations. Currently CoMO's head office is in Perth, Western Australia sharing an office with our australian meningitis organization - The Meningitis Centre.

The Meningitis Centre was created after the founders daughter survived Pneumococcal Meningitis but was left with life long disabilities and her father wanted to help save other families from the devastation which had affected his family. Perth also has the Amanda Young Foundation founded in memory of Amanda who died after developing Meningococcal Meningitis. These two organizations have worked hard to increase awareness of meningitis in Australia, support research and achieve scheduled vaccinations to save future generations.

Our personal meningitis story started 17 years ago when our baby son developed Pneumococcal Meningitis at 5 1/2 months. Miraculously after 10 days of fighting for his life in ICU and two months in hospital he won his fight but life was changed forever because our baby left the hospital with severe brain damage. epilepsy, partial deafness and severe muscle weakness down his right side.

Meningitis organizations are sometimes the only point of support for families who have been through this horrible journey. Our family couldn't spell meningitis let alone understand what had happened and a lot of comfort was found in a little Meningitis Centre pamphlet we found in the parent room of the hospital. The Meningitis Centre had been formed and they'd put out their first pamphlet. 17 years later they do much more than one little pamphlet. They distribute information and literature to hospitals and any organizations who request them, they give awareness talks so medical professions can understand the impact the disease has on families, they provide on line and phone support to anyone who wants information and/or support. They collect data and work with researchers and government departments to ensure research is continued, community awareness increased and vaccines are scheduled.

For World Meningitis Day we Join Hands for Meningitis to raise awareness. Joining hands is a symbol of solidarity, strength and support. Linked together we are strong and supportive. When someone is lying in bed fighting for life holding their hand is often the only thing you can do to physically support them and afterwards they often need a helping hand to journey through life.

So please, on this World Meningitis Day, visit the CoMO website and if you are outside of Australia and would like to connect with a meningitis organization in your country this is the website to help you. http://www.comoonline.org/ and their facebook page https://www.facebook.com/ConfederationOfMeningitisOrganisations?fref=ts

In Australia please visit The Meningitis Centre website. http://www.meningitis.com.au/ and their facebook page https://www.facebook.com/MeningitisCentre?fref=ts

And if you live in Perth, Western Australia and are free at 11.30am please come and join us in the Murray Street mall to Join Hands for Meningitis. Imagine a line of people down Murray Street mall joining hands to show their support for the families who have been touched by meningitis and showing the government that we care and want scheduled vaccines to halt this disease.

If you can't join us in the Murray Street mall that doesn't mean you can't show your support. Take a photo of yourself, your family and friends Joining Hands for Meningitis and post it on the CoMO and Meningitis Centre facebook pages.

Please don't let this happen to someone you love.

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