20 April 2016
This World Meningitis Day our theme is 24 Hours – Time to Act. Here at CoMO, we want to highlight the importance of 24 hours when it comes to meningitis.
24 hours can mean the difference between life and death or disability, therefore it is essential that more people know the signs and symptoms and act fast by consulting a healthcare professional if they are concerned about themselves or their loved ones.
Our members’ experiences with meningitis inspire us to raise awareness of this potentially deadly disease. Please read the eye-opening stories of our members, Bruce Langoulant and Patsy Schanbaum, and CoMO president, Chris Head, to make sure you understand the importance of 24 hours.
Asia Pacific Leader
Christmas Day and the days around it are significant for families coming together, celebrating their love for each other at the end of another year and the prospects and resolutions for the new one ahead. Lots of merriment, laughter, hugs and kisses. Special times for young and old as we all have a break to gather and share the occasion. This was us on Christmas Day 1989, young parents with daughters who were three years and six months old. Amongst this time of joy our 6 month old baby daughter had a visit from a deadly bacterial infection called meningitis.
As very young parents we were not ready, nor experienced for the immediate urgency required of this event. On Boxing Day evening the first signs appeared and overnight as we all slept it rapidly advanced. By the morning of the following day, just 24 hours later we were in hospital Emergency and all hands were fighting to save our daughters life!
How did this happen to our dear Ashleigh? Our beautiful baby girl living in a modern city in a caring and safe home environment and having the world at her feet. What had just happened to us? Did we do all we could have done and what are Ash’s prospects? Is a normal life still a reality for her and for us as her loving parents?
Ash survived and her fighting spirit lives on today. She survived but lost so much. Pneumococcal meningitis, as we learned, can be very damaging and has left her with a wide range of permanent physical and intellectual disabilities. She has never walked or talked and is profoundly deaf. Cerebral palsy and epilepsy are also a part of her new world.
There were no vaccines and there was very little public awareness of meningitis in 1989. We were sitting ducks as were many other parents at that time. Our learnings we share from our critical 24 hours of experience all those years ago we believe are still important today. Parents should trust their instincts with a sick child. Get medical advice as quickly as possible. Illness rarely occurs at the best time of day. Be sure, not sorry. Be persistent until you are happy with a diagnosis. As our three daughters have now grown up to be inspiring young adults we all know the responsibility is still as it was all those years ago for all parents.
You are in charge!
Those like us who personally know meningitis, simply will never forget it or its impact. Sadly, many of those who knew this bacterial disease did so for only a short time, as the disease quickly and effectively destroyed their bodies and took their lives. The numbers tell us that meningitis is contracted by as many as 2,600 people in the U.S. each year, many of whom are young, healthy students in our high schools and colleges looking forward to a long and productive education and life.
My daughter Jamie is a charming, bright young woman. She likes to bike ride, hangout with her friends and was a perfectly healthy 20 year old when she became ill with meningococcal meningitis. In a matter of hours she went from a charming, vibrant young woman to enduring seven gruelling months in hospital.
As a mother I watched my daughter endure multiple amputations to this rapid and dangerous infection. She could have been any young woman you know - your daughter, sister, neighbour, friend. As a young adult and a student at the University of Texas, she was at greater risk than most for meningococcal disease, something we only learned after she became sick. I almost lost my daughter to meningococcal disease, a ravaging and potentially deadly form of bacterial meningitis.
Jamie and I urge you to tell everyone you know about this disease. Vaccinate your children and encourage other parents to do the same. If your child was vaccinated, make sure they receive the booster. If you’re a college student, make sure you’ve been vaccinated.
There are no excuses - Prevent what is Preventable.
These personal stories told by Patsy Schanbaum and Bruce Langoulant give us a vivid and moving insight into what it is like when meningitis strikes a member of your family. Your world is turned upside down, in moments. Happy, loving, successful – in short, ordinary - families are thrown into confusion and pain by the unwanted and all-too-fast arrival of this dreadful disease.
As President of CoMO and a former CEO of Meningitis Research Foundation I have been involved with people affected by this disease for many years and I know these experiences are, sadly, not unique. Every minute of every day other families around the world are going through the same thing. Meningitis kills one in ten people affected, and leaves one in four of the survivors with a life-long disability.
But as well as showing us the devastating impact meningitis can have, Patsy’s and Bruce’s stories are also telling us something else. That many forms of meningitis can be prevented through vaccination. And that, for the types of meningitis for which vaccination is not yet available, it is possible to get life-saving treatment if you know the symptoms and act quickly. We should listen to them.
Check out the symptoms of meningitis, and act fast if you suspect any of them are showing in someone you know and love. Make sure you and your family have all the available vaccinations against meningitis.
Do all you can to ensure you don’t have to tell others a story like Patsy or Bruce.
For more information on World Meningitis Day and 24 Hours please click here.
Bruce is the leader of CoMO’s Asia Pacific region and the Chairman of The Meningitis Centre in Perth, Australia. Bruce’s passion for meningitis awareness comes from caring for his daughter Ashleigh, who contracted pneumococcal meningitis in 1989 at just six months of age. Read Bruce and Jenni’s story.
Patsy Schanbaum is the leader of CoMO’s Americas region and founder of the JAMIE Group in Texas, USA. Patsy’s work to raise awareness of meningitis began after her daughter Jamie developed the disease at 20 years of age. Read Patsy and Jamie’s story.
Chris Head is President of CoMO and former CEO of the Meningitis Research Foundation in Bristol, UK. Chris is also on the Steering Committees of both the Global Meningococcal Initiative (GMI) and the Meningitis Free World Initiative (MFW).