Jan. 12, 2021

Advocacy in Action

Advocacy in Action

Fellow bacterial meningitis survivor Francesca Testa stops by for a visit to share her harrowing experience with the disease more than 15 years ago. As two former athletes, John and Francesca discuss the challenges they each faced in regaining their stre...


Fellow bacterial meningitis survivor Francesca Testa stops by for a visit to share her harrowing experience with the disease more than 15 years ago. As two former athletes, John and Francesca discuss the challenges they each faced in regaining their strength and independence to return to the activities they loved. Francesca also tells John how meningitis shaped her desire to earn graduate degrees in both public health and law, with the goal of pursuing a career in health policy.

 

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Transcript

John:

We have a lot in common because we're both meningitis survivors.

Francesca Testa:

Yeah. We definitely are and we blessed to be here to be able to share our stories.

John:

Yeah, we are. You were in high school when you got meningitis; is that right?

Francesca Testa:

I was a senior in high school. So, I was 17 - just before my 18th birthday. I was quite the the social one in high school. I was also an athlete. I was a swimmer. Competitive athletics, theater and just being a normal teenager and hang out with your friends pretty much took up most of my time. This is definitely not something when you're 17 that you think about - something like meningitis. You don't even think about getting sick. you know. You hear stories, but you think that it can never happen to you. Had you ever heard of meningitis? Not really. I think I used to watch a lot of medical shows on TV. I think House was actually my favorite show at the time. You hear all these big words, but it was never really something I knew much about and never really heard anything from my parents about it. I hadn't talked to any of my doctors about it either. You know, at that age I just went in for my visits and got whatever shots at that point they recommended. It wasn't anything that you heard of, in conversation or really knew about.

John:

You were a pretty average high school student. I mean, you were an athlete, so that makes you a little different than average. From a health standpoint, you were healthy. You were ten feet tall and bulletproof. I felt like I was, and meningitis was nothing on your radar. You were going to the doctor. You were taking your vitamins or whatever, and everything's pretty much normal, right?

Francesca Testa:

Yeah. It's definitely not something that you wake up one day and expect to have - a life-changing event, you know. You're healthy, active, doing everything, that you're supposed to be doing at 17.

John:

So, you stated that you were a swimmer. I think you were a pretty good swimmer. Is that true?

Francesca Testa:

I was competitive. It was definitely something at that point in my life as a senior in high school, you're kind of looking forward to college. I had been recruited to quite a few schools and had decided upon the school that I was going to go to for swimming. Being able to be a scholarship swimmer after contracting meningitis changed the course of my future.

John:

I played basketball and soccer and other sports in high school myself, but there weren't any colleges looking for me to come play for them, especially on a scholarship level. You may want to downplay it a little bit, but it sounds to me like you were obviously very active as you mentioned and pretty good at swimming.

Francesca Testa:

That was definitely yes, most of my high school life. Yeah.

John:

Everything was fine until it wasn't. You got meningitis - bacterial meningitis. When was that?

Francesca Testa:

It was April of 2006 - actually right after Easter, after my family had celebrated. You know getting to the end of your senior year, you're looking forward to prom, senior trips and of course spending the summer with your friends before everybody goes off to college. I had been feeling a little bit sick but nothing that was very severe. Then one morning I woke up and I went from being a totally healthy, active teenager to, basically fighting for my life at that point. Similar to a lot of others who have bacterial meningitis, most of my symptoms started out just as you would think with the seasonal flu. I had a fever; I was tired. I had body aches. I was a little bit nauseous and, you kind of just pass it off - you know, I'm 17. Maybe I have a cold; maybe I have the flu. It wasn't until I started to get a very severe headache and an extremely high fever - almost 105 when we thought to call my my physician. I went in there on a Saturday afternoon. They took my temperature. They sat me down, listened to my lungs and pretty much said we think it's the flu. If it doesn't get any better we'll get chest x-rays next week. I was sent home. I was told to drink some Gatorade and take a nap. So, of course my mom brought me back home. Later that afternoon, within hours I deteriorated rapidly. The fever never went away. I had a headache pretty much unlike anything I had had in my life and I had had migraines. We've all probably had a regular headache, but this was definitely different. You can't move your neck. You almost feel like the whole top half of your body is paralyzed in pain. I also had a unique symptom actually. It was very difficult to associate actually what I was seeing or thinking or what's coming out of your mouth. So, I would see my mom, and I would call her my dad or I'd see my dad, and I call him my mom. I remember asking my mom and saying, dad, can you go get my prom dress? Dad, can you go get my prom dress? Of course my parents at that point were extremely worried.

John:

Yeah, I would guess so. That's odd. I've not heard that one before.

Francesca Testa:

It's very odd because you actually know it's happening. It almost feels like you're hallucinating, but you're still lucid. They definitely attributed that to my fever that was still about 105. Anyone, children, teens, or adults, having a fever that high can cause hallucinations. It can cause visions. It can cause things like that, but we had the reassurance from my physician at that point that she probably has the flu. I went to bed that night, and that was the last thing I remember before waking up in the hospital attached to the ventilator about two weeks later. The next morning my mom came in and saw, that I hadn't drank my Gatorade. She tried to wake me up, and she couldn't. So, of course you call the ambulance. That's the first thing you think of. What's the first thing the ambulance driver thought of was oh, she's 17 years old - maybe it's drugs. That's the first thing the ambulance driver said to my parents. Of course my parents know me and know I'm a healthy teenager. I'm super active; I'm an athlete. It definitely wasn't drugs. One of the ambulance drivers was the first one to notice that I had purple spots all over my body from the top of my hairline all the way down to my toes. As soon as he saw them, he knew that it was something way more serious than they had thought. So, they rushed me to the first hospital. You know, this is 2006 so of course some hospitals had some infectious disease protocols. Actually really widespread protocols didn't come up until post 2006 and even some until the Ebola crisis just a few years ago. When they brought me to the hospital, they knew something was wrong. They put on masks and they actually put me in a closet because they didn't have an infectious disease room. They didn't know what it was, but out of precaution, they did the spinal tap. They saw that it was most likely meningitis and I was airlifted to Yale New Haven hospital in Connecticut because the current hospital couldn't treat me. When I got there, the physicians told my parents I had about a 20% chance of survival. This was about 10:00 AM the next day. All of this happened in less than 24 hours, which is why it's so scary for parents. I'm home with my parents, but college students are away from their families. I know that's you. I think John, were you away at college when you contracted meningitis?

John:

Yes. I was about 250 miles away from my my family when it happened. My story has several unique and miraculous twists and turns that got me to the hospital. Then several things happened from there too. I also was thought to be on drugs. I had a friend of mine found me unconscious in apartment and called 911. Originally, the ambulance that came for me thought it was drugs too. They were pretty adamant with my friend that if you can tell us what he's taken, we can fix it or make it better. I'd known the friend for about two years and knew him pretty well. He said that he didn't think I took drugs. You know? Maybe there's a dark side to John that I don't know, but obviously it wasn't true,. They thought it looked like an overdose. I have heard the same thing with some other people that I've talked to about meningitis stories. Drugs usually comes up because it's at an age when it is experimental time for kids. It happens pretty often, but it certainly wasn't the case for me. It wasn't the case for you either.

Francesca Testa:

No. I think that's also why education is so important to being able to have others recognize the signs and symptoms and get ahead of it and calling 911. In other instances, people haven't gotten to the hospital quickly enough. It's definitely tough to be away from your parents when something like that happens. Thankfully, my parents also recognized it and called 911. You get that story by talking to them after the fact because you're unconscious - you don't really know what's happening. So, tell me what it feels like to be told that your child potentially has a 20% chance of surviving through the night. I don't think any parent or any family wants to hear that. I was in a coma for about two weeks and was intubated. Thankfully the nurses and the doctors at the hospital that I was at were able to do another spinal tap, recognize exactly what that purple rash was and know that they had to treat it in an emergent way and with different treatments in order to stop the spread of it. I had what's called meningococcemia or septicemia where the bacteria invades your bloodstream, which is essentially what causes those big purple spots. Others have had amputations due to meningitis because it cuts off the blood flow to your extremities - sometimes even your nose, the tips of your fingers, your feet, and your hands. Their first thought was, we might have to amputate her right leg. So, in addition to trying to save my life, they were also trying to save a 17 year old athlete's limbs at the same time. I'm just thankful that they acted quickly, and that I'm still here to be able to share my story. Even after two weeks in the hospital and waking up still alive, the recovery from having bacterial meningitis was something almost as difficult as the time in the hospital.

John:

Yeah. I couldn't agree more with that statement. I was in a coma for about seven days. So, I remember nothing of that, but the fight that our bodies were going through during that time period was tremendous. From my vantage point, not knowing any of that and waking up to the realization that life is significantly different than the last time I remember going to sleep, the road ahead was challenging to say the least. Before we get to that, do you have notes or did your family take notes to recount things that happened in the hospital? Do you have anything about your hospital stay during that two weeks of the things that were happening? You obviously weren't given a very good chance of survival. Then, there were some other things that may have been happening to you with the amputation and other organ failures.

Francesca Testa:

Unfortunately, it definitely took a significant toll on my parents. My mom, wasn't able to come to the hospital for a lot of the time, and I do have two younger brothers. She stayed home with them and my dad spent a majority of the time in the hospital with me. While I was in the hospital fighting for my life hopefully not having any of these amputations, my dad's been able to recount some things for me. One of the things was because I was 17, there were a couple of treatments at the time that were only available for those who were over the age of 18. Luckily the hospital is a teaching hospital so they actually had quite a few clinical trials. They had a lot of different medications that they had been trying. They had some fellows that were actually working in different infectious disease areas in the hospital. I was lucky because I was right at the cusp of hitting that 18 mark. My dad was actually the one wo consented to being able to use some of those experimental treatments on me. When you're told your child only has a 20% chance of survival, you're going to try anything that you can. Luckily at one point, the treatments actually stopped the septic shock that my body had gone into although it doesn't get rid of the damage that's done from the bacteria. It doesn't get rid of those scars or any of the tissue death, but it stops it from spreading. They were able to save my leg, and the rash was eventually stopped because of that. They weren't able to wake me up from the coma. It took quite a few different folks to come in. I remember my parents telling me that they called my friends and family members. I guess probably the most interesting part of the story is they eventually called my swim coach to come down to the hospital to see if he could talk to me and wake me up a little bit and bring me up and off of the ventilator. You don't really think your swim coach or your coach, who's yelling at you every single week during practice as the one voice that you would respond to while you're in the coma, but it actually was. They brought him down and he sat with me for a couple hours. Eventually that's the first person I remember seeing when I woke up. Once I woke up, of course, I didn't really realize what happened, but at the same time I did. It's a very weird feeling to know that your life has changed, but at the same time, feel like nothing has changed. I'm grateful for all the treatment there. What people don't also think about is what was happening to everybody else in your life while you were in the hospital. When you have an infectious disease, like bacterial meningitis, it doesn't just affect you. It affects your family, your friends, everybody that you came in contact with. Being on an athletic team, all of the athletes on the team had to be treated. They're typically treated with a drug called Cipro, which is a prophylactic treatment for people who have been exposed. I mentioned that I got sick right after Easter. We had seen my entire extended family for the holiday - everybody from my grandparents, all the way down to my cousins who were only about five years old at the time. I'm fighting for my life. My parents were trying to make some tough decisions at the same time. I have siblings that they're worried about. The community is worried, not just about me, but also about other people, because we don't want to have community spread. We have some notes to be able to compare. One of the things that I really wish I knew and I didn't think about until afterwards is I wish I knew what strain of meningitis I had. As I started to learn more and I wanted to educate others to spread the message, learning about what strain I had would be invaluable. In certain instances, if you're treated very quickly with broad range antibiotics, when the diagnosis isn't yet clear can actually impede the results of being able to serotype the spinal fluid when you get a spinal tap. I had been given the broad range antibiotics at the first hospital so they weren't able to serotype me when I was airlifted to the second hospital. They do suspect which one of the serotypes I had of the five total serotypes for meningococcal disease.

John:

So there's a few things that were interesting. I don't think I knew what type either but from what I've been led to believe it was B. You mentioned you were at a teaching hospital. I think you said it was at Yale. I was also at the university hospital where I was going to school - Texas Tech University in Lubbock, Texas. That was also a learning hospital. There were lots of other things going on at the hospital. You mentioned that and it got me thinking that maybe there's something that played a role in helping understand what was going on with me, as well. Also, you mentioned that you had to go through what I think we would probably now refer to as contact tracing - going back through all the people that you've interacted with in the last 24 - 48 hours, four or five days, or whatever the time period was. The same thing happened for me. I was involved in intramural basketball, and we played soccer a lot. I was in a fraternity and I went to meetings with people and just hung out with many friends. I was a typical social guy. There were potentially lots of people who had come in contact with me. I don't know if people were freaked out about it; I just don't know that. I know that if I were in that situation as somebody who ad come in contact with somebody who had COVID, let's say, I think I would be pretty nervous about what things could happen. I'd be very interested in getting something to help steer the tide from that.

Francesca Testa:

Definitely. It's really interesting to see in the environment we're living in now with COVID while thinking back to what happened with us and how that played out in our communities and just our circle of friends. It's hard for physicians. People have asked me before about going to the doctor and being misdiagnosed. A lot of medical professionals don't necessarily see a case of bacterial meningitis ever while they're practicing. It isn't a very common thing. It's not like we're spreading the common cold to each other. It is something that spreads with close contact. Although we know it's more prevalent in certain age groups, again, still some nurses, doctors, even some infectious disease specialists may not see advanced cases of things like bacterial meningitis in their career. I don't personally ever look back and wonder why I wasn't diagnosed the day before. I just know that I think it's important as survivors to continue to educate others, and to also work with people like nurses, physicians and even medical students. If they ever do see somebody in a clinic or an emergency room they think twice about the symptoms that someone is coming in with. Hopefully a rapid treatment can stop the progression of the disease. It's so fast; that is really what sets it apart.

John:

It's tremendously fast, and I think you're right. Spreading an awareness with the medical professionals also is important. They've all been through countless years of medical experience. Because of the rareness of meningitis, you just want it to be on the top of mind when patients come in and look the way they do. Let's remember about meningitis before we move on to other things. Did you anybody who had had meningitis?

Francesca Testa:

No, I hadn't. I do think it's a good point to make sure people know that I wasn't vaccinated at the time when I contracted bacterial meningitis. The initial vaccine, the mem ACWY vaccine, was approved in 2005, I believe by the FDA. I contracted it in 2006. There wasn't really a lot of talk about vaccines then just like there, wasn't a lot of talk about meningitis. You just know I'm going to go get a physical before I go to college. You know they'll give me whatever I need at that point. I wasn't vaccinated. Had I been vaccinated, this may have been preventable. To your point about going to the hospitals and having medical professionals recognize it, I also want parents and teenagers to know that there are two different vaccines. You might have the men ACWY that's been mainstream over more than a decade or in recent years we now have the FDA approved meningitis, B vaccine. I know you mentioned potentially being meningitis B and contracting it in college as meningitis B is the prevalent strain typically in college outbreaks. I don't want a parent to walk into a hospital and think their child's protected and they didn't know about the meningitis B vaccine. I think that component is super important too.

John:

Okay. So, now we know you have meningitis. You're out of the hospital and you're probably a wreck trying to understand some pretty basic human functions. What was life like after the hospital, or on the road back home, basically?

Francesca Testa:

It was definitely very tough. It's hard for someone who is pretty active in their regular life to have to take a step back. Even though I woke up and I was off the ventilator it didn't mean that the recovery stopped there. I think it's really important to talk about. We know it's a relatively rare disease and we don't necessarily talk about. Even if you survive, what long-term effects do you survive with? While I was still in the hospital, recovering, I couldn't walk; I wasn't able to do anything for myself. I couldn't shower. I couldn't get up to walk down the hall. I had an extreme headache pretty much 24 seven. When they finally were able to send me home, I still couldn't walk. I think that was probably the biggest challenge. I slept on a couch on the first floor of our house for probably about two months. I had a visiting nurse and physical therapists come to my house every other day. You just lose the ability to do even the smallest things for yourself, besides the pain of the recurring headaches and not being able to walk again after having some of that muscle tissue die from the septicemia. You also have the mental side of things as well. It's kind of coming to terms with how your life is changing. You have the physical effects of coming home to recover, but you also have the mental and emotional effects of coming home to recover. I think in that moment, I realized that I don't think my future plans are going to quite end up the way that I had hoped. A I contracted it in April. I pretty much spent all of the summer, May through August, really just learning how to walk and how to be able to even jog again and being able to do regular activities without tiring. It wasn't just the walking that I had to learn how to do again. Bacterial meningitis also causes some cognitive effects and other physical effects. I suffered some cognitive impairment and some short-term memory. Also, I was dealing with some hearing and vision loss. At this point I decided that I was going to stay home and I wasn't going to go away to college. I still wanted that to be my goal. I think that having the one thing that you love to do, and that you are really looking forward to getting back to, I think that that really pushes you to put everything you have into your recovery. I thought I was able to come back and start with a different swim team at a local school. I was able to do it, not at the level I was at before, but at least I was able to get back into the pool. I think that's one of the things that really saved me during that initial recovery was at least having that one thing that you can look towards and that you love to do. It was never easy after that. Any sort of rehab comes with setbacks - days where, you feel like you ust can't do it like everybody else can. It's very frustrating. When you're in college and you're a swimmer, or you have a demanding schedule, just like any other sport, you have practice before school, you have school all day, then you have practice after school. It's just things like that; you can't necessarily keep up with the same level that everyone else. You have got to keep working towards it. I know I mentioned some of the hearing and vision loss which impacts athletes greatly. I was never able to hear the buzzer go off when we started races. I would have to look for the flash of light that the starters let off. You adapt to all of these things, but you never quite get over them. Sometimes it's a day where it's a mental or emotional roadblock and other days it's a physical roadblock that you never anticipated.

John:

Was it difficult to try to see the starter, or did you perform lower than you expected ?

Francesca Testa:

I was able to adapt to my environment, definitely. It also only affected one side of my body. Unfortunately during my stay at the hospital, I didn't have really any vision problems and I didn't have any hearing problems. Having it all on one side of your body definitely makes you move to adapt to that. There were times where I couldn't hear the starter, and I couldn't see the starter depending on where it was at the pool. There were also times where I couldn't see the wall when I was doing flip turns. It also impacted me if part of my body was moving or turning in a certain way and the right side of my body was the only side that was out of the water .You can't see the flags when you're swimming. It definitely took a lot of adapting such as learning how to do stroke counts that other athletes didn't have to do. Learning that if you see a certain line on the bottom of the pool, you know, how many strokes you have until you get to the walls so you don't hit it. It was definitely a disadvantage not being able to hear or see the starter at certain pools, of course it also puts you at a disadvantage. Going into college, after coming off of a great senior year and not being at the level that you think you're going to be at is very discouraging. Also, learning all the things that we learn after we have meningitis even though we survive, like learning that had I had access to the vaccine at that point, it could have been prevented. The one thing that I do try to drive home the point is I do get asked and, John, I don't know if you get this question is, if you could go back would you change things or would you have done anything differently? I think with infectious disease and you can't necessarily do something differently, of course, besides maybe get the vaccine if it's available. I don't think at this point that I would go back. I think the reason for that is that because even though you've had all these setbacks and you've gone through something that's really challenging, it's challenged me in ways now that I can hopefully pass on in a positive way to other people. It made me a different type of athlete that I don't know I could have been had I not been presented with this type of a challenge,

John:

I have been asked if I would go back and do things differently. Really, I don't know that there's much I could have done differently. The vaccines were really nonexistent in 1998 when I came in contact with it. I certainly agree with what you're saying. It's changed me. I think it's changed me in mostly positive ways. You deal with a lot and work through a lot of things. Everybody struggles with certain things and everybody has their own challenges in life. For a guy like myself, who really didn't know much about challenge, like I found out about through meningitis, I think it's made me a better person. I think something else that happens, especially because of the age in which this impacted you and I, is that we are adaptable - the younger we are, the more adaptable we are. We want to improve. We want to get back to returning to college. It happened for me in February. I was in the hospital for 21 days and went home to my parents'' house for the rest of the semester. My objective was to get back into school in the fall semester. So I did. It was really an interesting journey getting back into college and working through all the changes were upon me. I didn't know anybody else who had meningitis. I didn't know anybody else who was blind that I could call up and say, Hey, tell me about what it's like to do this, or how do you do that? So, just working through finding the people, finding the solutions, finding different ways to do things, all the adaptations and things that were necessary. I was pretty excited about doing those things. I think a lot of that was due to my family who was a very strong influence and still is to this day. My faith helped. My friends at school really embraced me and helped me back through the process. It doesn't happen that way for everyone and not everybody has the same results that I did. That's what my experience was. Getting back for you was getting back in the pool for me getting back was getting back into school.

Francesca Testa:

Yeah. Really for me, the hearing and the vision loss was really challenging.

John:

I've talked to people who have vision loss through the podcast. I know somebody who has been blind since birth, and they wouldn't change it because they don't know any different. They think everything is just fine the way it is. That's just a mindset that you have to go with. It's probably a good way to think because it's unlikely to change. You just have to make do with what you can and see the sunny side of things. That's generally the way I try to do it too.

Francesca Testa:
Yeah, definitely.

John:
So let's see. We are 15 or so years removed from meningitis, and you still have some lasting effects from that. Are things kind of the same as they were then, or have things improved or changed for the worse since 2005?

Francesca Testa:
Well, my vision has gotten progressively worse since I had bacterial meningitis and it has definitely gotten worse with age. My hearing damage pretty much never changed since since I had bacterial meningitis. I do still have quite a few cognitive issues mainly with memory actually, and some level of impairment in terms of remembering things mainly in the short term. As you get physically stronger over the years and as time passes some of the long-term effects and some of the disability that people experience is never going to go away. Unfortunately for me, vision is definitely the part of it that has gotten worse with age for me speciffically.

John:
So we have that in common, at least the vision element of things. Something else I think we have in common is that you got connected the national meningitis association. I don't think it was something that you immediately did. I mean, you probably didn't roll out of the hospital and get involved with an organization like that, but you decided at some point you were going to do that. What led you to the NMA?

Francesca Testa:
I got my first phone call while I was in college from Lynn Bowsoff, who was the president of NMA at the time. My college had run an article in the newspaper related to my swimming and to meningitis. Lynn had actually seen that article and gave me a call. Honestly, I wasn't really ready to talk about meningitis. I think it was for the reason of just being a teenager at the time. it was kind of like I had it, you know, it derails my plans, but I had moved on at that point. It wasn't something that I really necessarily was ready to go back to and tell my story or rehash and bring up - all of those feelings that you have after you face something that changes your life. Lynn accepted that. Then a few years later after I had graduated college in 2010, she called me again and asked me about attending a training for some new advocates. I will think about it. She called me again. Then she called me a third time. By the third time I decided I would jump in to see what this is all about. If anything, at least I can meet other people who went through something similar. Similar to your story, I was the only one that contracted meningitis at the time. I'm also the only one of my friends, family members, or most people you come in contact with that's ever had it. I flew to Atlanta for training in 2010. Ever since then, I've been doing everything I can to work with the NMA and to work in my community. I realized that it's important to take what happened to me and to make it a positive experience. The only way I can do that is to share my story with other people and to hopefully use that as an educational point. What happened to me doesn't happen to anyone else in my position, and it doesn't happen to anyone else's family.

John:
Based on what, I've, what I know about you, you've been pretty involved. You've done a lot of things with the NMA and ave been a very good advocate through panels, meeting with people, talking to people, telling your story, and talking about obviously the importance of the vaccines. The NMA has another campaign called the 16 vaccine, which is about men, B vaccine. Is that right?

Francesca Testa:
We, we bring up the men B vaccine, but also focus a lot on the second dose of the meningitis ACWY vaccine, as well as other teen vaccines. You know, they are so important. The second dose of the meningitis vaccine is important because as we know now, years after the first one was approved, is that the efficacy of that vaccination wears off over time. It was initially thought to have a high efficacy for 10 years. We now know that that's really only about five. The reason that it's such a big part of the 16 vaccine campaign is because we want families to know that you need to have the second dose at age 16 to 17 in order to have full protection, whether you're going on to college, whether you're going to a technical school, or whether you're just going into the workforce, it's really important that you have that protection for the full 10 years. You don't get that with just the first dose. So that's really the crux of the 16 vaccine campaign, educating people that there is a second dose for their child or adolescent. I think that's one of the the hardest things when you're 16 or 17. Now you have your license, you have more independence and the first thing on your mind, isn't when's my next physical, or when do I have to go back to get another vaccine? That's really a hard group to reach. I think that that's really a huge, huge part of what we're trying to do in that educational campaign. I love working with the NMA. I have learned an immense amount over my time with them as an advocate and had a lot of opportunities to share my information with people where it could really make a difference. I briefly mentioned before with physicians, nurses and school nurses, people who are on the frontline who are treating people like us that I don't want another family to have to be in that position like we were if there is a vaccine that could potentially prevent it. I'm also now working towards a career in public health, which I think is really a hundred percent motivated by my work with the NMA. I now have my master's in public health. The majority of the work I did there was on vaccines and health disparities and how we can reach populations that might be uninsured or under-insured and how we can work with them to make sure that they get the well visit care and the vaccinations that they need. Now I've moved on to legislative work advocacy work in the policy realm. I'm going to law school now to hopefully be able to work in public health law when I graduate.

John:
Yeah. Let's back up there just a little bit, Francesca you have such a compelling and incredible story. Not only did you get meningitis when you're in high school, suffered all the setbacks that we've we've discussed and probably many more we haven't even discussed, you go on to college, you get your master's degree, and you keep you on moving into public health, right? And now you are in law school. . It sounds like you might be fueled by, at least in part, from your experience with meningitis and an organization like the NMA to help fuel the fire to keep going. That's incredible.

Francesca Testa:
Well, thank you. I think it's really also what I can offer to others and trying to make the world of public health a little bit better if I can. I think when we look towards things like policy and advocacy one of the things that just speaks volumes to people who are making these policy decisions is to have somebody tell their story and having that personal connection. So that people know there's a face behind these diseases or that there's a face behind this vaccination could potentially help to prevent it. I think that message is never lost. I think that it's extremely important as we work towards improving public health policy across the country

John:
To take another step forward in the vaccine world, you're the co-chair of the Vaccine Alliance of Connecticut. ow did you get connected with those guys?

Francesca Testa:
I am currently the co-chair of the Vaccine Alliance of Connecticut with my counterpart who works with the March of Dimes. We currently are connected with other nonprofits in the area. We are essentially a network of public health experts, organizations, parents, individuals, and anyone with a common goal of improving the health of our communities and the health of our schools through education, public health, education, and advocacy. I actually got involved in that because of my advocacy work with the NMA. I was introduced to my coach currently, as well as others other organizations in public health, in the state of Connecticut through some legislative work that I was doing. They asked me if I would like to be the co-chair of this Alliance that we were starting to form in the area. Of course, I said, yes. For about two years, maybe a little bit less than two years, our coalition has really been working to gain public and legislative support for a lot of our healthy community initiatives, educating the public about the benefits of vaccines and why they're so important. Essentially, the Alliance started right before COVID hit. I think now more than ever, it's been really beneficial to our community here in Connecticut to have a coalition of individuals, and also organizations that are that really just to bring that common goal of having a healthy, you community, whether that means a local community, state, the country, or internationally. Our goal here is to be a source of information if anyone has any questions or if a parent has a concern, and to dispel any myths that surround the vaccine community. That's why I'm doing it. To me it's just really important. I know we can say it over and over again, but if I can help just one family know that the meningitis vaccine is out there and that this is when they should get it then it is worth it. This is the meningitis B vaccine.

John:
Okay. Francesca that is really a compelling story and some great information. Where is the best place for people to go to find out more about your story and about meningitis?

Francesca Testa:
We actually have a couple of websites. The first would be the National Meningitis Association's website. They have a lot of great information. It also has advocate stories on it like mine, but it also has some local information and state information. If you're interested about what your state's policies may be and you can find them at nmaus.org. We talked earlier about the 16 Vaccine campaign. If you're interested in that you can visit the16vaccine.org. The last place we talked about was actually my work in Connecticut. So if you're interested in visiting the Vaccination Alliance of Connecticut's website, it is vaccinatect.org.

John:
Tremendous. Thanks a bunch Francesca. Hope to talk to you again soon.

Francesca Testa:
Thank you for having me.

 

Francesca Testa

Meningitis Survivor, Advocate

Just after Easter in 2006, Francesca’s mom found her motionless in bed with purplish spots on her face, wrists and legs. Francesca had been feeling sick with a fever for a few weeks. She had seen a doctor earlier that day and asked if it might be meningitis, but was told it was just the flu. At the hospital doctors gave Francesca a 20 percent chance of survival. She beat the odds, but needed intensive physical therapy to return to normal activities, which included competitive swimming. Francesca still has long-term complications.