World Meningitis Day 2024

WEBVTT

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Music.

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Welcome to destiny is debatable a podcast and movement that will encourage you

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to build your life into the one you want,

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here's your host a guy who knows possibility is always a possibility john grimes.

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Hey hey hey greetings welcome back thanks for tuning in subscribing and supporting

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the podcast experience.

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October 5th is World Meningitis Day, an opportunity to shine a light and spread

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awareness about a vaccine-preventable disease.

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And once again this year, we have spanned the globe to collect stories about

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people that have been affected by meningitis and have them share their experience in their own words.

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My name is Christine Benborn. I am a mother of two. I live in Sweden, in Europe.

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I am also a founder of the Meningitis Organization here in Sweden.

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My professional job is a CFO.

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So I'm not a doctor or anything like that. So whatever I say,

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I have just learned by myself through various organizations and so on about meningitis.

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I also am part of the International Organization, Confederation of Meningitis

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Organizations, where I was in the advisory council representing Europe.

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How was I affected by meningitis?

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Well, it all started in 2019 when my oldest son, Matthias, woke up one Sunday.

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Not feeling very well, and it quickly turned out that it was much more than

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a regular flu, which the doctors at the healthcare center said that he had.

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And the day after, he turned ill much more than he was from the beginning.

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And he basically died in front of our eyes on the grass outside our summer house.

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When the doctors told us that he had died from meningitis and sepsis,

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we were like big question marks because we had never heard about meningitis before.

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So we had no clue what they were talking about. out, I searched on the internet

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for meningitis to find out what it was.

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I quickly came to foreign sites and I decided I need to do something about this

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because it can't be that a country like Sweden do not have information about

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this horrible disease in the media or even when you search on the internet.

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So after the funeral, basically, of my son, I started to create an organization here in Sweden.

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And the basic thing is to make sure that people get the information about the

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meningitis, what it is, what about the symptoms, the quickness of the sickness.

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When you get sick that you need to get immediate medical attention

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and that you also can get vaccinated

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so that is basically what I work with

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apart from my normal job is to share information about the meningitis through

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social media through we have been on tv four times I've been talking some policy

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here in Sweden I've also been at the conference I've been teaching at some schools for for nurses,

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just to share the awareness about the disease and how horrible this disease is.

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I can say that I have seen an effect on it because when it all started for us in 2019,

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it was hardly, as I said, any information about it in the Swedish sites that

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you came to on the internet. Now it's much, much more.

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It's more like vaccine centers and also medical centers that are writing about it.

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We have produced leaflets, we have produced a folder.

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Small ID cards with the symptoms that we send out for free to anyone who wants

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it, just to share the awareness about the disease.

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And especially also that you can get vaccinated about it.

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Because here in Sweden, this vaccine is not part of the national vaccination

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program, which I think is really, really bad.

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Because this is a very, very serious disease that you can die from.

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I think it's just wrong that it's not part of the vaccination program.

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This is also something that I work with to share that information specifically

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to the risk groups here in Sweden.

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The risk groups are the small children from zero to about five,

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and then the teenagers and the young adults.

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They are more than 50% of all cases here in Sweden.

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So that is my focus group to make sure that they get information about this disease.

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I think it's working because I get the information from people who find our

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sites, our Facebook site or our Instagram and so on, that they have seen the information.

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And also three families have contacted us, said blunt out that you saved my

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daughter and my son's life because we came to the hospital in time.

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So they got the antibiotics and survived. vibe.

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And then I can see that even though I lost my son, I will never get him back.

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I've done something for the greater good for everybody else.

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And it means something. It's to honor his life, basically.

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I will continue to do that as long as I live, basically.

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My name is Shaquille Hodge, and I was first

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introduced to meningitis in 2018 when my

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wife was taken by it um so it means a lot to me

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that i spread the word to people because i had no idea on what it was or how

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drastic and how deadly it is so my wife was a 27 we were on vacation and then

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one day she just woke up sick and within 24 hours she was in the hospital in a coma not waking up,

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and i'm just losing my mind and they keep saying meningitis meningitis and i'm

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just like like, what is meningitis?

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So, you know, I hopped on my phone and I start researching, researching,

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researching, and I'm finding out all this stuff about meningitis and how deadly

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it is and how quick it is and how silent it is.

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That was one of the things like, wow, I never knew about meningitis.

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So when she passed, I was like, I have to do something because my wife was the

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type of person who loved to help people, who loved to love.

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She was a neat freak. So it was kind of crazy that she was the one to get sick,

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but I was like, I need to do something to honor her.

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I need to do something to get the word out there about meningitis.

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So I decided to go ahead and start PAMA Foundation. I'm the CEO and founder of PAMA Foundation.

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PAMA actually stands for her name, Priscilla Amory April Hodge.

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So we just went ahead and broke her name down and made it to initials and founded

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PAMA Foundation. Our logo is a hand holding a mushroom.

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And my son, actually my middle child he actually designed at the time he was five or six i believe.

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Maybe younger, but he designed it and he said, maybe we should have the hand

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holding a mushroom because in Mario, because Mario at the time was his favorite

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game, he said that Mario, the mushroom brings you back to life.

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That's what the whole logo represents, mind of a child.

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We went with it, it fits perfectly, we love it.

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To me, meningitis is important to spread awareness because not too many people

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know about it, not too many people know that one in five people don't survive

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meningitis. And if you do, it's some type of serious disability that you have

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to live with for the rest of your life.

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There's not enough research being done here in the United States.

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There's not enough talks about it being done here in the United States.

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So Panama Foundation, our goal is to spread awareness.

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And we go ahead and spread awareness

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through car shows because I'm a car enthusiast. I customize cars.

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I'm big in the car scene here in Atlanta and across the country.

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So we put together a car show every year and we talk about meningitis.

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We spread the word, we give flyers, and since that's my niche,

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that's what we use to go ahead and spread the word.

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We also do scholarships for high school seniors, and what we do is we make them

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do a research paper on meningitis, and they submit it.

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We review it, and we pick the top three, and they receive a scholarship that

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we raise from the car show.

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The monies that we raise from the car show, we distribute it to those students

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so they can have a scholarship. And we also go ahead and try to assist with

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any type of research or any type of vaccination events that we can do.

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So to me, it's very important because I didn't know about it and I lost my loved one.

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So if there's anything that I could do to go ahead and educate someone else

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so that way they can look out for the signs that they could know what to expect

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or what they can do to prevent.

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That's what I want to do because I don't want anyone to go through the same

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pain that me, my children, my family had to go through. So that's why meningitis

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is super important to me.

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Hello there. My name is Katie Thompson. I live outside of Charleston,

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South Carolina in the United States.

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I am a patient advocate and meningitis survivor.

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My journey with bacterial meningitis began in 2005 at the age of 18.

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I was a freshman in college. and one evening I stood up from my dorm room desk

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to excruciating pain in my back and legs.

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I'd herniated a disc that compressed my spinal cord.

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I had surgery, but then suffered complications and a few weeks later contracted bacterial meningitis.

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Those weeks battling meningitis were the most horrific time of my young life.

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It was a level of pain and suffering I would not wish on anyone.

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I was in and out of consciousness, but what I do remember is extremely traumatic,

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including a night my parents were told to prepare themselves for the worst.

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I was legitimately too scared to die on my own, and since my parents couldn't

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stay with me in the ICU, I stayed in my room on the neuro ward that night,

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and I somehow made it through.

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What followed were weeks of bed-bound recovery.

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I had to be fed, bathed, and changed by others as I couldn't lift my head off the bed.

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I knew during that time that I had to do something to help educate others.

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I had to help spare them this torture as meningitis destroys not only lives,

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but also families. After six weeks, I was discharged to home nursing care.

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I was determined to get back to college, so after a total of about six months

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off and several hospitalizations, I finally went back and began taking summer school courses.

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I've had many more surgeries since then.

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I now have three spinal cord stimulators that help me live as independent a

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life as possible with the neurological damage I've sustained.

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Meningitis still dominates every minute of my life almost 20 years later,

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but for all it has taken from me, I've also been very blessed for what I've gone through.

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What I want people to know about meningitis is just how horrible this disease is.

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It is not something anyone should have to endure, and I want people to know

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how easily it can now be prevented.

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In 2005, there were not any vaccines available for meningitis B, and now there are.

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And while meningitis is rare, the potential consequences are just too devastating.

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One in 10 patients die from this disease and one in five bacterial meningitis

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survivors live with lifelong and potentially disabling complications.

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Even one life, one family affected by this disease is too many.

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And the majority of meningitis patients are our most vulnerable.

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Babies and adolescents are the the most affected groups.

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As an advocate, I have had amazing opportunities to learn and travel and share

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my story with millions across the United States and beyond.

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I work to help raise awareness and inform others so that hopefully one day my

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story is no longer needed.

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Meningitis is preventable. The more that we talk to each other about meningitis,

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talk to the parents in our lives, to the young people in our lives,

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the more that we raise awareness, the closer we can get to eventually realizing

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a world without this terrible disease.

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Through my work as an advocate, but also as an artist and writer,

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I share my experiences in and hopes to help others feel hope in their own struggles.

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I share my story because I have been blessed with so much love and compassion,

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and the world needs hope more than ever.

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We can give that to ourselves and each other. This is my story and my way of

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connecting with the world, and this is my work to help make it a better place.

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Meningitis has taught me to appreciate the love in everyone and everything. thing.

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This world is so beautiful, yet so fleeting, and we all leave our own indelible mark on it.

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So I ask those who hear my story to please let it leave you with awareness,

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love, and with hope for all of those who have been impacted by this disease.

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My name is Clayton Musungu from Kenya, co-founder of Meningitis Information

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Foundation in Kenya, the first ever charity that works around meningitis issues.

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My journey with meningitis started in 2018, around September,

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when a friend of mine, a very close friend of mine, lost his wife.

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The wife was expectant. She was seven months expectant. And it was very devastating

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to see my friend go through what he went through.

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Unfortunately, when this lady was sick, it was the second malaria.

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She went to two different hospitals, and they were not able to detect meningitis.

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And I think the big reason is

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that mostly around here, people don't even understand what meningitis is.

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And many people have never even come across meningitis, and they don't even understand what it is.

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Signs and symptoms, nobody kind of knows that.

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So it was around that time in 2018, September, when I was talking to my friend

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and I saw how depressed he was,

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I quickly thought that sometime in 1989, there was an outbreak of meningitis

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in one of the largest slums in Eastern Central Africa, known as Kibira, based in Nairobi.

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And I reflected back. I said, no, I needed to do something about meningitis.

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In the process, I went through the internet and came across Confederation of

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Meningitis Organization as one of the global charities that was focusing on meningitis.

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I quickly wrote to them together with my friend. We wrote to them and requested to.

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The members of the Confederation of Meningitis Organization,

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mostly known as COMO, and we got to be registered as associate members.

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From then, the journey has been to understand what is all about meningitis,

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who is suffering from meningitis.

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And in the process, I went around and I got into some families in different counties in Kenya,

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and it was very, very depressing to see what meningitis could do to somebody permanently.

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So in the process, I've been a member of the Confederation of Meningitis Organization.

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When it became now apparent that Africa had to be given a region from the European

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Europe-Africa region, I was privileged actually to become the first advisory

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council member representing Africa.

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And then later on, I became the chair, and I'm very privileged to be the chair

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of the advisory council.

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What has happened around here is that signs and symptoms of meningitis are not

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well understood by many people, including the health professionals.

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And there's always misdiagnosis, and people have not been lucky when it comes to treatment.

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Unfortunately, also, the vaccination is not in the national calendar to treat meningitis.

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You could find some private hospitals that have those vaccinations and they

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are quite expensive and many people cannot afford.

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So what did I do after becoming very close to working with the other partners globally?

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I thought it was important to start creating awareness and also So involving

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the government to really understand that this thing needs to be tackled.

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So we have been actually creating our NS, having meetings with the ministry.

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I was privileged last year in September to be part of the stakeholders who are

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in our workshop to develop a national plan to defeat meningitis by 2030.

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And this year, now we have planned the first ever meningitis celebration in

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Kenya, which we have partnered with the largest children's hospital,

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get to Children's Hospital, which has several clinics spread across the country.

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And we will be running a whole one week of sensitization and awareness about meningitis.

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And going forward, we will defeat meningitis by 2030.

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Hello, my name is Jamie. I am in central New Jersey. It exists,

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it's real, and it's called pork roll.

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I am a survivor of bacterial meningitis from 2009.

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I was 22 years old at the time. I was not vaccinated or anything, nor was I in school.

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How was I affected by meningitis? this.

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First, I almost died. It was the absolute worst pain I've ever been in my life,

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and this was over a decade ago, and I can still say that.

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I spent a month in the hospital. After a month in the hospital,

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it took me a good five to six months to relearn how to walk and how to use my hand again.

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Those were the things that were affected most for me.

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I was heavily medicated due to the pain I was in.

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I was on hydromorphine in the hospital.

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Once I left the hospital, I was on fentanyl.

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It was and still is difficult for me to go through medical anything.

00:19:38.717 --> 00:19:42.817
I definitely have some medical trauma because of everything I've been through.

00:19:42.997 --> 00:19:47.617
So if I get even little stomach aches. I get a little worried,

00:19:47.717 --> 00:19:49.217
like, oh God, what's wrong?

00:19:49.717 --> 00:19:55.477
Do I need the doctor? Do I need the hospital? So that is how meningitis has

00:19:55.477 --> 00:20:02.277
affected me physically and definitely mentally, which I'll share more a little bit later.

00:20:02.997 --> 00:20:07.837
With help from my family, my mom and my future husband At the time,

00:20:07.857 --> 00:20:14.777
I was able to relearn how to walk and relearn how to use my left hand.

00:20:15.197 --> 00:20:20.937
So I am whole, unlike many others. So I am a lucky survivor.

00:20:21.657 --> 00:20:26.177
What should people know about meningitis? One, it exists.

00:20:26.497 --> 00:20:31.157
I'd love people to know that there is meningitis. There's a meningitis regular

00:20:31.157 --> 00:20:37.357
and there's a meningitis B. B, there's multiple strains and multiple preventions.

00:20:38.157 --> 00:20:43.137
I also would love people to know, hey, it's deadly. It's not a little sneeze.

00:20:43.797 --> 00:20:46.837
It's not a little cold. It'll just go away.

00:20:47.097 --> 00:20:53.457
It's not something that you could just give water to and feed somebody and Tylenol.

00:20:53.577 --> 00:20:58.337
This is something that needs emergency medical care promptly.

00:20:58.337 --> 00:21:05.997
I also would like people to know that if you are lucky to survive having meningitis,

00:21:06.277 --> 00:21:10.317
you will most likely be changed forever.

00:21:11.699 --> 00:21:18.659
I wish people would automatically, like I do, see a young child and wonder,

00:21:18.779 --> 00:21:22.659
have they been treated, have prevention,

00:21:22.839 --> 00:21:27.859
you know, methods done for meningitis or not?

00:21:27.939 --> 00:21:32.419
That's something I always think about when I see a child. So that would be amazing.

00:21:32.559 --> 00:21:34.879
If I could wish for something, that would be it.

00:21:35.159 --> 00:21:39.299
What have I done to spread awareness of meningitis?

00:21:39.639 --> 00:21:41.339
Well, I share my story.

00:21:41.699 --> 00:21:45.479
I share my story with anybody who wants to hear me.

00:21:45.899 --> 00:21:50.499
Friends, family, of course, people I meet and who will listen.

00:21:50.859 --> 00:21:56.599
I even have an elevator story ready to go, so I got even a little short thing ready.

00:21:56.599 --> 00:22:03.979
I additionally travel the country and share my story with people as well in

00:22:03.979 --> 00:22:11.199
hopes that people will understand how dangerous it is and that there are prevention

00:22:11.199 --> 00:22:14.059
methods available to help prevent it.

00:22:14.999 --> 00:22:21.399
Also, I'm very proud that I openly share how it affected my mental health.

00:22:21.399 --> 00:22:30.139
So I share that very openly so that other people who suffer in silence or they

00:22:30.139 --> 00:22:34.019
just seem physically okay, but inside they're not.

00:22:34.019 --> 00:22:38.799
I share that very openly because I know how difficult it is.

00:22:38.879 --> 00:22:42.899
I know how isolating it can be. And anybody who hears me, whether it's because

00:22:42.899 --> 00:22:48.499
of meningitis or another physical illness, any kind of illness,

00:22:48.719 --> 00:22:50.899
anything whatsoever, please know you're not alone.

00:22:51.599 --> 00:22:53.639
There is light at the end of the tunnel.

00:22:54.499 --> 00:23:00.899
So that is something I spread as well as for awareness that I think,

00:23:00.939 --> 00:23:03.119
at least for me, they're hand in hand.

00:23:04.326 --> 00:23:11.586
My name is Tom Nutt. I am chief executive of the UK-based charity Meningitis Now.

00:23:11.766 --> 00:23:15.586
We're a charity that's been around in the UK since 1986.

00:23:16.246 --> 00:23:21.866
You might say a classic medical charity. We fund research, we raise awareness,

00:23:22.086 --> 00:23:25.406
and we support people who've been affected by meningitis.

00:23:25.926 --> 00:23:28.866
And this is a role I took on in 2017.

00:23:29.426 --> 00:23:33.606
But in fact, I don't have direct personal experience of meningitis.

00:23:33.706 --> 00:23:35.806
You could say I'm fortunate in that regard.

00:23:36.606 --> 00:23:42.466
Although I don't have direct experience of meningitis, what I do do in my day-to-day

00:23:42.466 --> 00:23:49.126
work is to spend time with the meningitis now family, people who've maybe lost

00:23:49.126 --> 00:23:50.806
loved ones to the disease,

00:23:51.066 --> 00:23:53.506
people who've had the disease themselves,

00:23:53.906 --> 00:23:59.286
or maybe a work colleague, a sibling, all sorts.

00:23:59.606 --> 00:24:02.706
The meningitis now family, it's a real privilege

00:24:02.706 --> 00:24:05.406
to be part of that people sometimes look at me as

00:24:05.406 --> 00:24:08.166
chief executive and you know look think of it

00:24:08.166 --> 00:24:12.326
in a hierarchical way you know i'm in charge of the charity but actually i always

00:24:12.326 --> 00:24:16.626
say the charity is nothing if not its people and really the hierarchy is should

00:24:16.626 --> 00:24:21.146
be inverted turned on its head in other words you know the people that we support

00:24:21.146 --> 00:24:24.386
and who support us are top of the tree and i'm just there to make sure that

00:24:24.386 --> 00:24:25.926
what we do makes a difference.

00:24:26.931 --> 00:24:30.891
Meningitis is a devastating and terrible disease.

00:24:31.231 --> 00:24:37.171
It can kill within 24 hours and anywhere between a third and half of those people

00:24:37.171 --> 00:24:40.951
affected will be maybe left with life-changing after effects,

00:24:41.111 --> 00:24:46.831
which may be physical in the form of perhaps amputations or sensory impairments.

00:24:46.831 --> 00:24:49.791
And John I know you for example have

00:24:49.791 --> 00:24:52.871
a visual impairment there may be after effects such as

00:24:52.871 --> 00:24:55.911
brain damage as well as emotional and

00:24:55.911 --> 00:25:01.231
psychological issues as well so it's really important that people know that

00:25:01.231 --> 00:25:05.071
meningitis although rare when it strikes and of course it can affect people

00:25:05.071 --> 00:25:10.731
of all ages is is a terrible and devastating disease and allied to that I suppose

00:25:10.731 --> 00:25:13.651
our message as a charity is twofold, really.

00:25:13.751 --> 00:25:19.031
One is for people to know that meningitis is, of course, vaccine preventable in some cases.

00:25:19.311 --> 00:25:23.511
And here in the UK, of course, we are lucky to have five vaccines available

00:25:23.511 --> 00:25:25.971
on the NHS to people of different ages.

00:25:26.451 --> 00:25:30.211
And those vaccines will help protect those people against some,

00:25:30.251 --> 00:25:31.811
but not all, the causes of meningitis.

00:25:32.131 --> 00:25:36.611
So it's really important that people know that vaccines are safe and effective

00:25:36.611 --> 00:25:38.311
at preventing meningitis.

00:25:38.671 --> 00:25:42.551
And we would always encourage people, in spite of any hesitations or worries

00:25:42.551 --> 00:25:46.191
or concerns they might have about vaccines, that they take up those vaccines

00:25:46.191 --> 00:25:47.451
if they're available to them.

00:25:47.891 --> 00:25:53.371
I suppose at the same time, we're always determined to ensure that everybody

00:25:53.371 --> 00:25:55.631
knows the signs and symptoms of meningitis.

00:25:56.231 --> 00:26:00.891
So it's really, really important that people of all ages know the risks of meningitis,

00:26:01.071 --> 00:26:05.891
know what to look out for should they think it has struck, and know to seek

00:26:05.891 --> 00:26:10.451
urgent medical help in that kind of situation. Those are life-saving messages.

00:26:11.091 --> 00:26:14.851
Get your vaccination, it could save your life or save the lives of others and

00:26:14.851 --> 00:26:18.931
know the signs and symptoms because acting fast could save a life as well.

00:26:19.271 --> 00:26:22.871
The other thing I'd want people to know about meningitis is that there is hope.

00:26:23.826 --> 00:26:27.166
We know from the people we support, we know from evidence we collect,

00:26:27.346 --> 00:26:30.386
that meningitis can be isolating for individuals,

00:26:30.706 --> 00:26:35.226
therefore feel very alone as they live their lives after meningitis,

00:26:35.346 --> 00:26:38.906
perhaps having lost a loved one or navigating life with after effects that may

00:26:38.906 --> 00:26:40.666
be hidden or may not even be known.

00:26:40.666 --> 00:26:44.146
I would want people to know that certainly for people in the UK,

00:26:44.226 --> 00:26:49.866
there is the hope that comes from becoming part of the Meningitis Now family

00:26:49.866 --> 00:26:54.746
by reaching out to Meningitis Now and seeing if there are practical ways that

00:26:54.746 --> 00:26:57.366
we can help and support you.

00:26:58.166 --> 00:27:02.246
Partly that's the comfort of being within the Meningitis Now family,

00:27:02.346 --> 00:27:07.646
but it's also about knowing that we can help you to access support and services

00:27:07.646 --> 00:27:09.806
that might help you in your life.

00:27:10.666 --> 00:27:14.726
I think that summarizes what I think I would like people to know about meningitis,

00:27:15.026 --> 00:27:18.726
what they need to do to prevent it, what they need to do should it strike.

00:27:18.946 --> 00:27:22.706
But also, if you're out there and you've had experience of meningitis,

00:27:22.726 --> 00:27:28.406
just how a charity such as Meningitis Now can help you live with your life with

00:27:28.406 --> 00:27:32.786
hope and maybe rebuild your future if you've lost your way or are struggling

00:27:32.786 --> 00:27:34.266
with those after effects.

00:27:34.746 --> 00:27:40.706
What are we doing to spread awareness? Again, listeners to your podcast who've

00:27:40.706 --> 00:27:44.306
listened before and have heard about the work of other charities and similar

00:27:44.306 --> 00:27:49.406
not-for-profit organizations, well, we probably do very similar things to them.

00:27:49.546 --> 00:27:52.986
We work really hard to raise awareness of signs and symptoms.

00:27:53.646 --> 00:27:58.126
As a charity, we've distributed literally millions, tens of millions of credit

00:27:58.126 --> 00:28:05.486
card-sized signs and symptoms cards. We distribute those to at-risk audiences

00:28:05.486 --> 00:28:07.606
across the UK, whether that's,

00:28:08.189 --> 00:28:11.649
new parents, undergraduate students and students at college,

00:28:11.969 --> 00:28:15.389
older people, but really anyone of all age, anyone of any age,

00:28:15.509 --> 00:28:18.229
because of course meningitis, it doesn't discriminate, does it?

00:28:18.289 --> 00:28:22.629
It affects people of all ages, albeit with certain age groups of an elevated risk.

00:28:23.049 --> 00:28:28.049
So signs and symptoms awareness is really important, and we do that through physical cards.

00:28:28.809 --> 00:28:33.649
Obviously now a lot of our work is now targeting people through digital methods

00:28:33.649 --> 00:28:36.429
and means we essentially don't

00:28:36.429 --> 00:28:39.769
pass up any opportunity to talk about vaccines or signs and symptoms.

00:28:39.989 --> 00:28:46.029
Only last week, I was on, again, BBC News, in this case, BBC Breakfast News.

00:28:46.209 --> 00:28:52.889
This time, I was with a lady called Sue, who lost her adult son, Alex, in 2020.

00:28:53.349 --> 00:28:59.109
A healthy young man who tragically lost his life through meningitis.

00:28:59.189 --> 00:29:04.269
She was sharing her story to the BBC television news audience at breakfast time.

00:29:04.429 --> 00:29:09.789
And in particular, she was talking about how Alex, her son, perhaps hadn't had

00:29:09.789 --> 00:29:14.749
the confidence to talk to the doctors and nurses that he was seeing to share

00:29:14.749 --> 00:29:18.749
the full range of symptoms that he was experiencing.

00:29:19.409 --> 00:29:23.409
So we're now working with Sue as a charity to try and improve,

00:29:23.789 --> 00:29:28.069
if you like, the sort of health literacy of young people, to give them the confidence

00:29:28.069 --> 00:29:30.469
to seek medical help when they need it,

00:29:30.529 --> 00:29:38.149
because that's one of the issues that she has identified as a contributing factor

00:29:38.149 --> 00:29:41.089
to the tragic death of young Alex.

00:29:41.349 --> 00:29:45.929
But how brilliant is that to be on the BBC, literally talking to millions of

00:29:45.929 --> 00:29:48.849
people and spreading that awareness, raising message?

00:29:49.369 --> 00:29:54.389
Similarly, each year as a charity, Meninge Arts now launches what we call our student campaign.

00:29:54.569 --> 00:29:57.749
We do that in August, and it runs pretty much all the way through the autumn.

00:29:58.449 --> 00:30:00.889
Reaching out to young people, students in particular.

00:30:01.069 --> 00:30:04.669
So I was on the radio for much of, it feels like for much of August,

00:30:04.849 --> 00:30:09.069
talking to people about vaccines and signs and symptoms, and again,

00:30:09.089 --> 00:30:11.629
reaching a large audience via that medium.

00:30:12.069 --> 00:30:15.009
As a charity, we also work in partnership whenever possible.

00:30:15.229 --> 00:30:21.229
So for example, we work with one of the large pharmaceutical companies active in this area, GSK.

00:30:21.289 --> 00:30:23.309
They operate in the UK and globally.

00:30:23.609 --> 00:30:25.629
They produce a MenB vaccination.

00:30:26.229 --> 00:30:31.549
We work with them. We take advantage, if you like, of their not inconsiderable

00:30:31.549 --> 00:30:34.829
resources to raise awareness of meningitis.

00:30:35.109 --> 00:30:39.749
And we do so as part of what I call a roundtable group of like-minded organizations.

00:30:40.049 --> 00:30:44.469
So that's us, meningitis now in the chair of that group, along with GSK.

00:30:44.789 --> 00:30:49.049
We work with NHS England. We work with the UK Health Security Agency,

00:30:49.049 --> 00:30:51.749
which is the public health body here in the UK.

00:30:51.949 --> 00:30:57.589
We work with other charities, including the Meningitis Research Foundation and A Life for a Cure.

00:30:58.431 --> 00:31:04.671
And through that collaborative group, we help to raise awareness online through social media channels.

00:31:05.091 --> 00:31:08.311
So that's a bit of a whistle-stop tour of just some of the things we do.

00:31:08.391 --> 00:31:11.731
Naturally, we also have a website, which is meningitisnow.org,

00:31:11.771 --> 00:31:14.671
for anyone listening who might be interested to take a look.

00:31:14.871 --> 00:31:20.051
But I suppose I would probably end where I began, really, which is that what

00:31:20.051 --> 00:31:26.911
we do as a charity is to spread awareness, partly by me talking about meningitis

00:31:26.911 --> 00:31:28.511
on things like this podcast.

00:31:28.971 --> 00:31:32.851
But actually, more often than not, people aren't really interested in listening

00:31:32.851 --> 00:31:35.891
to me, apart from your good self, John, and maybe some of your listeners.

00:31:36.011 --> 00:31:40.031
But actually, what people are really interested in hearing is the stories of

00:31:40.031 --> 00:31:43.891
the meningitis in our family, those people who've experienced this terrible

00:31:43.891 --> 00:31:47.451
disease, and often powerful and compelling stories.

00:31:47.711 --> 00:31:52.331
And so what we do as a charity is to provide a platform form for those people

00:31:52.331 --> 00:31:57.571
to share their stories in the hope that what had happened to them in their lives

00:31:57.571 --> 00:31:58.931
doesn't happen to other people.

00:31:59.071 --> 00:32:03.291
So again, that's a preventative message, but also a message of hope.

00:32:03.531 --> 00:32:09.051
For all the devastation the meningitis causes, I think retaining hope is really, really important.

00:32:09.551 --> 00:32:15.491
In the UK, meningitis is thankfully, hopefully in the decline in the long run.

00:32:16.271 --> 00:32:21.391
Interestingly, it's going back up after a brief lull during the COVID pandemic.

00:32:21.851 --> 00:32:25.551
We've seen a near doubling of cases according to the most recent statistics.

00:32:25.691 --> 00:32:28.031
So there's still a big job of work to be done.

00:32:28.391 --> 00:32:31.631
But we should have hope that the vaccines we have available,

00:32:31.731 --> 00:32:36.391
combined with our awareness, raising messages and the good sense of people out

00:32:36.391 --> 00:32:39.831
there that, you know, one day we will finally defeat meningitis.

00:32:39.971 --> 00:32:42.571
And I think that's a really hopeful message.

00:32:43.901 --> 00:32:47.661
If we don't have hope, we don't have anything. And I think that's an important

00:32:47.661 --> 00:32:51.561
message that you can draw through all of those stories is hope.

00:32:52.141 --> 00:32:56.601
Meningitis is a vaccine-preventable disease. And by sharing these stories and

00:32:56.601 --> 00:32:59.781
raising awareness, we will defeat meningitis.

00:33:00.481 --> 00:33:05.401
And my personal experience with meningitis has certainly taught me a lot of life lessons.

00:33:06.101 --> 00:33:10.741
One of the very early ones was that survival is not the end of the journey.

00:33:11.681 --> 00:33:17.681
It's just the beginning. And in my journey, I have certainly had my ups and downs and wondered why.

00:33:17.961 --> 00:33:21.161
And ultimately, I came to understand that that was not time well spent.

00:33:21.481 --> 00:33:26.241
One of the most important lessons that meningitis has taught me is that destiny is debatable.

00:33:26.481 --> 00:33:30.601
And the filter through which I view my circumstances is most certainly up to me.

00:33:31.381 --> 00:33:35.901
And my advice, don't wait to start building your life into the one you want.

00:33:36.881 --> 00:33:42.281
Waiting, it's like being in line at the DMV. Your future seems to be in the hands of the apathetic.

00:33:42.901 --> 00:33:46.881
Doctors with poor prognosis, bosses and employees that don't respect you,

00:33:47.001 --> 00:33:49.001
even your own nagging self-doubt.

00:33:49.581 --> 00:33:54.421
Don't wait. Just do the next right thing. Even if that means taking two steps

00:33:54.421 --> 00:33:57.401
forward and one step back. That's still progress.

00:33:57.841 --> 00:34:00.381
And in Texas, we even call it dancing.

00:34:05.941 --> 00:34:09.201
Thanks so much for spending your time with the Destiny of Debatable podcast.

00:34:09.901 --> 00:34:14.001
Please rate and write a review wherever you subscribe. It really does help us

00:34:14.001 --> 00:34:15.221
grow and reach new people.

00:34:15.861 --> 00:34:19.401
For more information, visit johnbgrimes.com.

00:34:21.581 --> 00:34:24.121
Destiny is Debatable is a Symblom production.