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Missy and Sarah’s Meningitis B Story
On-Screen Text:
Sarah and Missy are meningococcal disease Advocates. They are not healthcare providers. This is their story in their own words.
Sarah and Missy were compensated by GSK for their participation in this program. This is the shared experience of two people. Other people’s experiences with meningococcal disease may be different.
Vaccination may not protect all recipients.
SARAH:
I saw a rash spreading from the tips of my ankles to my thighs, and the nurse took my temperature, and it was 105.8.
MISSY:
I couldn’t process what was happening. Something had gone just completely off the rails; it was happening so suddenly.
SARAH:
I was certain that I was dying.
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SARAH SURVIVOR
MISSY MOM & ADVOCATE
SARAH:
When I was a kid, I was very physically active with gymnastics, a competitive gymnast up until I was 16 years old, then was in college studying. I wanted to be a journalist and be a news anchor doing something with a communications degree, and it didn’t happen.
One day, I woke up with the impression that I had a cold of some sorts, but within a few hours, it turned out to be much more than a cold.
I was texting with my friend, and my exact text message to her said, “I feel as though something is attacking my mind and body,” and that’s when she contacted my mom, and my mom took me to the emergency room.
MISSY:
I’ll never forget the day that Sarah got sick because from that day everything changed. When I went to see Sarah in the examining room, she was not speaking clearly. Her words were becoming garbled. She had some vomit on her gown.
SARAH:
I was so scared of what was happening to me. I saw a rash spreading from the tips of my ankles to my thighs, and the nurse took my temperature, and it was 105.8.
MISSY:
I couldn’t process what was happening. Something had gone just completely off the rails. It was happening so suddenly, and when the doctor said, “You have to leave the room. We need to intubate her,” terror…I felt terror.
SARAH:
I asked my dad if I was dying. It was really scary because I was certain that I was dying, completely certain. They put me in a medically induced coma for five days, and during that time I was given IV antibiotics.
MISSY:
The doctors told us they didn’t know what to expect. They were suspecting meningitis, and I kept saying, “There’s no way. I know she was vaccinated. She does not have meningitis. It’s something else.”
On-Screen Text:
Sarah’s illness occurred in 2014, the same year meningitis B vaccination first became available.
MISSY:
The neurologist came in to do a spinal tap. They had to confirm her diagnosis, and they told us that Sarah definitely had meningitis B. She also had myelitis, encephalitis and septicemia. We immediately said, “What does this mean?” And they said, “There’s a lot of things it can mean. Sarah can have brain damage. She could lose limbs, she could lose her hearing, or she could die, and there’s no way we can tell you what’s going to happen now.”
The sensation I felt, my legs literally gave way under me, and I had to grasp onto my husband. It’s like the worst nightmare scene you can imagine.
While Sarah was in her medically induced coma, I was watching like a hawk for any sign of what the doctors told us could happen. We were just holding her hands and hoping for some sign that she was still in there.
SARAH:
When I woke up from my coma, I could barely hear anything, and everything I saw was doubled and tilted, and at that point I could not move my legs. I spent two weeks in the ICU.
I was taught how to take my first steps. I was taught how to swallow again, and that was only the beginning of my recovery. I had no idea what was going on and how it would impact my life in the future. I had no idea.
MISSY:
They said that 100% of her hearing was gone from her left ear and 20% from her right. And I just remember being relieved that that’s all, so far, that we had that wasn’t working, and it was just shocking to me that I could be grateful for hearing loss. After two weeks, she reached the point that she could slowly move with the walker, and that’s when she was discharged to a rehab hospital. (Background chatter)
SARAH:
I did vision therapy, bladder therapy and cognitive therapy along with physical, occupational and speech therapy. Every session felt like it lasted forever. I was tired all the time. My mom and dad let me move back in. They took care of me.
My mom drove me to therapy for months, supported me financially. They, I mean, they went and have gone above and beyond.
MISSY:
We had to remove all of our throw rugs. We had to put one of the detachable nozzles in her shower. We had to put a commode in her room because she wasn’t able to get up and get to the toilet fast enough. We had to buy adult diapers ’cause she wasn’t able to control her bladder and sometimes her bowels.
SARAH:
It took me about a year to realize the severity of what meningitis did to me and that all, a lot of the consequences from it were completely permanent.
Cognitive therapy was very difficult for me. It was very emotional, too, and very difficult to learn how to do things that I had been doing my entire life again, and I knew in the back of my brain that I could concentrate better. I knew that I could speak, I knew that I could do these things, but I couldn’t access that, and it was very frustrating for me. I was unbelievably uncomfortable talking to people and embarrassed. I felt very, very anxious. It was as though my identity went out the window.
Also, to be 22, 23 and see all my friends off at college and graduating and going into careers that they chose when I was completely powerless in my situation, it was very, very, very hard.
MISSY:
All these years later, Sarah is still dealing with meningitis on a daily basis. We haven’t been through the physical problems like Sarah has but we have I say it’s kind of like a PTSD. If the phone rings at an odd time, I immediately think it’s Sarah. I think something’s happened. My son is the same way. If I call him and start with a sentence “Sarah,” he’s like, “What happened, Mom?” So, we’re, we’re on edge, and we haven’t lost the fear of that phone ringing or something happening with Sarah.
SARAH:
When I look back on this journey, I feel really bad for myself. It was unbelievably difficult, and it breaks my heart, you know, even now thinking about myself just having problems with hearing every single day. It’s, it’s very sad.
I’ve made peace with what’s happened to me through creative work: painting, writing poetry, physical activity, yoga. It’s finding outlets to express it and accepting it. I am very passionate about educating others on meningitis because it’s, it is such a difficult life having these consequences.
MISSY:
Meningococcal disease is a terrible thing. It can change the lives of the patient and the patient’s family. I wouldn’t wish it on my worst enemy.
On-Screen Text:
Adolescents/young adults need vaccines to help protect against the 5 vaccine-preventable serogroups for meningitis—Men A, B, C, W, & Y. Vaccination may not protect all recipients.
MISSY:
I was surprised to find out the vaccine she had before did not cover meningitis B. I feel like I should have been more informed. Nobody told me about meningitis B and the dangers associated with it. I know it’s a rare disease, and it may not happen, but it happens. It happened to us. I want to say to the health professionals out there educate your patients! Talk to your patients about meningitis B.
SARAH:
I will do absolutely any and everything I can to educate people about meningitis and what they can do to help prevent it. Please help educate your patients about meningitis. Don’t leave it up to chance.
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BEXVID230052 November 2023
Produced in USA.
