Patient Perspectives: How to protect your family against meningitis B

Watch a roundtable discussion with people whose lives have been changed by Meningitis B, a serious and life-threatening bacterial infection.

Transcript

00:00

You're not invincible as a 20-something that when you feel very, very sick, you need to go to the hospital.

00:11

I'm Dr. David Hill. I'm a pediatrician practicing in Wilmington and Goldsboro, North Carolina. And today, I'm joined by John and Eileen,

00:20

and Tim, John and Eileen lost a daughter to meningitis type B, and also by Andy, who survived meningitis type B.

00:30

And we're also here with Linda, who has one college-aged child and one high school-aged child,

00:36

and she is really trying to determine the best way to protect her children from meningitis type B.

00:43

So I want to thank all of you for being here today. Andy, can you tell us a little bit

00:49

about what this thing is, and then I'd love to hear a little bit from John and Eileen as well.

00:57

Sure. It's a bacterial infection. It starts in your spinal cord and then, from there, it's,

01:05

you know, it's able to either travel up to the brain and kind of infect and inflame the brain and can cause brain damage or hearing loss, vision loss,

01:14

or, like, in my case, it traveled out into my bloodstream, which can be just as serious because there it can cause organ failure and limb

01:23

loss. And so it's an infection that moves incredibly quickly and can be very deadly

01:30

in a short period of time. I remember learning about it in school, and I didn't know there were five [serogroups] and I didn't know that one vaccine Kate received was only covering

01:39

four. That there is a strain that needs an extra vaccine, two doses, and that's out there now.

01:47

It wasn't there for Kate before, and we're all about having everyone get it. So it's something a lot of people are learning about.

01:55

There are different kinds of the vaccine, and they usually require multiple doses.

02:01

So be sure and talk to your doctor about what kind is available, what the dosing schedule is, and ensuring that whatever you start with

02:09

is the one that you end with. I just want to make sure that I'm pretty clear to my kids, especially the one that's

02:16

already in college, what symptoms they really need to recognize either in themselves or in their friends.

02:23

And I think you make a good point about watching out for their friends because that was literally life-saving for me.

02:30

I think, you know, the flu-like symptoms are going to happen sometimes, but then if they're accompanied by stuff like that purple rash that

02:38

doesn't blanch when you press on it or the really severe stiff neck. How fast did your symptoms come on?

02:45

Like, was it 24 hours, or-- So I was fine during the day, the day before,

02:52

and then around about seven or eight PM that night, I started to feel like I had

02:58

the flu, nauseous, cold sweats. It wasn't until the next morning, fairly early

03:05

the next morning, probably around five or six, when I first got up to get a drink, that's when I felt like, wow, I've got this weird pain in my feet.

03:14

And that's also when I noticed that I had those purple spots on my arms. Within a few hours of those symptoms,

03:23

I was essentially incapacitated. Would not have been able to leave my bed if my friends hadn't come in and saved me.

03:33

That leg pain is something that stood out with Kate. Everything, all her limbs hurt within 12 hours.

03:41

Can you tell us a little bit more about your outreach and awareness efforts? Yes.

03:48

As a family, we decided to go ahead and start a scholarship in her name up at Marist.

03:54

So we have an annual bike ride here in Babylon on Long Island, and we raise money and distribute

04:01

it half to the school and the other half to the meningitis foundation for research and awareness. It's really, it's a pleasant day, and it feels good.

04:09

I did write a book about my experience. I've gone and testified at multiple state legislatures.

04:16

I've also spoken to, I would say, dozens of high school classes and letting them know about the vaccines and about the symptoms.

04:25

And what sort of takeaways do you have, you think, from what these people are sharing with you? Well, obviously, I'll talk to the pediatrician.

04:34

My daughter has a checkup in July, so it's perfect timing. And then, also, I appreciate all the information on the symptoms, and I'll share that information with my kids

04:42

so they're aware of that too. I just hope everybody really can get this vaccine. It's one of those things where that if it does happen to you,