 My name is Jamie and I am a meningitis survivor and I'm going to tell you a little bit about my story and I'm being accompanied by a fly right now. So this is Intimidate. I've never done a PowerPoint with a iPad, so I'm just gonna look at you in the back. Okay, cool. It's cool. So I'm originally from Dallas. I grew up there until I was 14. I'm the youngest of four. My mother who's here and we'll be presenting in a little bit. She basically raised all of us on her own. My father ended up passing when I was just a couple months old due to cancer. And so she's been raising us. She did a wonderful job, you know, doing whatever she could when it comes to, you know, protecting her children and for some reason I was unlucky. I didn't do anything wrong. I went to college and unfortunately got sick with meningitis. Those pictures are semi out of order, but it's okay. So we're gonna kind of get into what happened when I got sick with meningitis. So it all happened when I was a sophomore in college. It was my first year at the University of Texas and I worked really hard to get there. Being the youngest of four, you kind of just follow your siblings' footsteps and they all went to UT. So I guess it was my turn. And when I got there, I again couldn't even enjoy a full semester without contracting the disease. I lived by myself and a mile from campus and it still affected me. So the night of when it happened. So I was at my friend's house doing laundry because that's what you do when you don't have a laundry machine. You go borrow friends. So I'm over there hanging out and I started to not feel well. And I asked if I could take a nap in her room and she said yes. And that led me to spending the night because it got a little severe. Flu-like symptoms, nausea, vomiting, couldn't really hold anything in. And then I noticed something different as I was going to the bathroom as often as I was. I noticed that... I'm gonna fly. I noticed that my hands were sensitive when I was flushing the toilet, touching the handles to wash my hands, the cold water, or I noticed that my feet were sensitive to the tile floor. But no one's like, oh, this is meningitis. No one would think that. It's just a peculiar side effect of me possibly just being really sick. The next morning it progressed a lot worse. I ended up going home. I lived again by myself, a third floor apartment, no elevator. And I'll get to why that's kind of important. I remember the sun was shining. It was a beautiful day. It was like 8 o'clock in the morning. I felt like garbage. I was burying myself under my blankets and couldn't regain any warmth. I was walking, you know, people walk like one, two, three, four. I'm walking struggling for one step at a time, holding myself up against the walls. Each step became more vital. I stopped going to my kitchen fridge to get water because the kitchen sink was closer. I stopped going to the kitchen sink because the bathroom sink was closer for water, you know, like dunking my head under to get some water. I don't know why. Whoa, sorry. I don't know why, but I decided to like maybe I could just fight it off. But luckily, my sister, who was attending the university at the time, called me and offered me a ride. And let me just say how rare that is for my sister to offer me a ride to school. I don't think she's ever done that, but she was optimistic that day, or maybe my dad somehow influenced her to come pick me up. And I said, no school. I think I needed to the hospital. And I also have a really bad asthma. And so maybe for some reason this would somehow correlate. And so she comes over and it's not like I opened my door. Welcome. Thank you. I left it unlocked and I was collapsed on the ground. And I was conscious and aware and she comes up and she touches my limbs and they hurt. And we decided to go to the hospital. And for the time for me to get to the car took about 20 minutes. Each step was so painful. And I think I like took my own blanket from my bedroom. I don't know where where that blanket is now. But I'm like walking down and I didn't even realize those were the last times I would be walking with my legs. The hospital was about two blocks from where I was. And I demanded a wheelchair. It was brought to the car. They wheeled me in. And I was seen immediately routine questions loss of chaos in a way. I was put on the bed routine questions putting the IV in me. And then on the other side of that I see the doctor talking to my sister. And he goes where's your mom. And my mom at the time was living in South Texas. And so she says she can't be here right now. And he looked at her and goes she needs to be here. And during that moment I swear everything went quiet. We both looked and knew that it was a scary moment. And then after that I was put in dialysis because luckily there was a nurse there that guessed that I had meningitis just due to what I looked like. I was in fetal position not retaining any warmth. I think I was asking for shots like injections of heat because I was so cold. So yeah, it was very lucky that she was there. The next day I was put on the ventilator. And then the next couple of weeks I was put in a semi-medicated coma. And I woke up from time to time seeing my limbs go from red rash to purple to black to literally rotting. And it's not like I'm moving around sitting up. I looked like a statue completely inflated. Couldn't move my arms. I felt like I had thousands of pounds of sand in me and I couldn't move. I literally had nurses. I was dependent on nurses to move my body to prevent bed sores. Anyway, so it was crazy. I was that day was a Thursday when I was admitted. I had exams all that week. I mean it was November. I was about to get into my finals and finish my semester. But I guess meningitis had a different course for me. So I actually didn't get out of the hospital for seven months. Which was cool. Being in the hospital for seven months it definitely affects you in a lot of different ways. Who's been in the hospital for like three days? Yeah, it's awful, right? Seven months it changes your your mental aspects. But anyways, so I had my amputations. It was definitely insanely hard. I didn't really know how painful it was gonna be until it actually occurred. But I did get out and these are some photos. Just out of curiosity, are you able to like start that slide, this very slide from the beginning? Because it goes one bullet point, then another bullet point, and then it shows some of my illness pictures. It's okay. But basically who knows what necrotic tissue looks like? I mean I'm assuming there's a lot of nurses and people who have seen it. Scabs. I'm not kidding. Went all the way to my thighs. I mean you can see my scars on my arms and obviously I had amputations. Menendritis. I feel very lucky honestly because all I have to do is put on my legs every day. With menendritis I could have become blind. I could have become deaf. I could have become mentally challenged. I could have had internal organ failures where I'll be taking multiple pills every day just to live my daily life. But I don't. So you know just to be in the hospital and then to learn that I could have been prevented as a whole other pill to take. And that's why I became an advocate because there was a time when I asked myself, you know why? Like this is unfair. Like why did this happen to me? We all hear stories but this is my story. It's existing to me. And then it's quickly transitioned to why does this have to keep happening to others which is why we became advocates. So my mother is going to come up here right now and talk about I guess her experience as a mother. I honestly can't imagine what it's like to see your daughter decay right before your eyes. But luckily you know there was another chance for me to lead a different life and we're going to talk about our nonprofit and much more. Hi everybody. So my name is Patsy, Jamie's mom, aka Jamie's mom. But anyway I want to tell you that that day that Jamie did get admitted really by the grace of God that emergency room nurse saw the rash that Jamie was developing on her, that patikia. And I think that's why he was able to diagnose it so quickly and how they were able to treat it with massive amounts of antibiotics and the dialysis to get her blood cleaned up. So like Jamie said she was in the hospital for seven months we were in Austin for about a month and then we were care flighted to Houston where we remained there for the rest of her time in the hospital and they immediately put her on hyperbaric treatment. So that first day we got there she did the oxygen therapy and so she did that for 60 days. And so that oxygen therapy because initially they were going to aim potato above the knees and to her forearms and you know again we ended up finding a vascular surgeon in Houston that was gonna head the team and take care of Jamie and he recommended the hyperbaric treatments and we were able to save a lot more than obviously than what was first anticipated. So while Jamie was in the hospital I mean she's an ICU forever but we ended up getting a room and that was in 09 when there was a legislative session getting ready to start. So like Jamie said why did it happen to her but why does it have to happen to anybody? So I had a good friend of mine Senator Eddie Lucio Jr. from the Valley who introduced me to Senator Wendy Davis who had taken on a bill presented to her by Senator LaTisha Vanderpute. So that happened in 09 and so we got this law and took it by CDC recommendations that said all kids living in dorms needed to have this meningitis vaccine. So needless to say I cried my way through all the testimony which is as advocates you know we always hear we're a pretty strong voice for for meningitis awareness for vaccine preventable disease because this is what happened to us. I'm not a doctor not research not science we're just a mom and a daughter this happened to us it happened to our family. So we were able to pass this law the Jamie Shambon Act is one of the fastest bills that went through the writing of the law. So by that next school I mean let me tell you we had conference calls with all the universities. I was not a popular mom with any of the universities in the state of Texas. And so we were able to pass that initial law that again it said all kids living in dorms have to have the vaccine. Jamie didn't live in a dorm she lived off campus so wouldn't have protected her anyway. So fast forward to the next legislative session unfortunately there was a young man named Nicholas Williams who was a student at A&M and he died within 14 hours I mean his parents didn't even weren't able to get to his bedside from meningitis. So at that time CDC had another recommendation that really all students entering college should have the meningitis vaccine. So we went back to legislative session and we amended the law it's now called the Jamie Shambon Nicholas Williams Act says all entering students have the vaccine. Texas is the first and only state to have that law we were so proud of it. It was just so amazing and we have over a half a million students that enter universities that have the vaccine so we're real proud of it. So we know a lot of work still has to be done because like Dr. Boone was saying we have a lot of exemptions in Texas is that horrible religious conscientious and medical exemption state and so all these kids go to college and they say well I'm not on my parents insurance anymore so therefore I don't have $450 let's say for a vaccine I'd rather use it on books and so the university say well here just sign this exemption form and you don't have to have the vaccine. So who is gonna take responsibility for that child when and if God forbid something should ever happen to them. So you need to say that's a project that Jamie and I along with other coalitions have on our book to try to get that exemptions those exemptions out of the way but again like I say we've got a lot of work to be done we'd rather have the 12th grade booster in there so that again these kids that are in 12th grade can be if they don't have the money or uninsured or underinsured can get it through the VFC program and so we are already in conversation with Senator Kirk Watson and Representative Donna Howard in Austin to try to get this passed by mandate so keep your fingers crossed but that being said we need everybody's support. Jamie and I are strong advocates but the whole of the group of people like Dr. Boone says that are really have created their own pack I mean they have funds out there to try to get all these people they I call them the whole food granola eating society people because there it's just it's it's just so wrong that they're not it's just a tragedy that they're not vaccinating their children and so when the whole dialogue started with your DA in San Antonio I mean I had conversations on Facebook with a lot of these people and a lot of them I have to say look many of them were saying how horrible of a mom I was to put my children through all this and I said well my daughter is severely disabled from a vaccine preventable disease so I'm feel sorry for your children you know I'm a mom I feel sorry for your children for the danger that you're putting your children through so you know we we all are in this together in hopefully you'll be a part of tip I know you know the Texas Immunization Partnership and are able to get into Austin and and as their group of people there I hope that everybody here will be a part of what we can do to help more and more people to become strong advocates to be aware of all the vaccine preventable diseases so anyway that being said I want Jamie tell her story about her cycling I know she hasn't said anything about that thanks ma'am um so yes when it comes to whoa whoa whoa whoa whoa whoa we're gonna go back all right cool when it comes to you know being advocates I just don't want anyone to go through what I did you know yes just the sentence of seven months in the hospital I mean yeah seven months but it really took out a year of my life because I didn't actually get fitted for prosthetics until a couple months later because I had open wounds on my limbs and then when I finally got up to walk I'm not really walking I'm actually walking for the first time without assistance so to actually like get to class I mean meninges you know it really knocked me out I'm very lucky so to talk about you know whatever happened else after my experience I did not expect any of this to occur I don't think anyone really did especially when we're just thinking about what my social aspect of life would be like because when you it was when you lose your process when you when you lose your legs well it was a tongue-tied yes you're learning how to walk but we use our hands way more you know from holding pins from holding the microphone to doing your makeup to putting your hair on to grabbing things to opening things I've really learned the hard way of how you know we can take things for granted and when it comes to these health innovations that we have access to today it kind of is a no brainer of yes I should have the opportunity to protect ourselves and to protect the community because for example my friend who has immune deficiency she's concerned about where her children will go to school in a sense of if their peer is not vaccinated their son could take it home and then she could be affected it's not just about your child's life it's about the community itself so I highly encourage it so basically I learned a lot about meningitis and vaccines so when I got sick I was a commuter if anyone knows Austin it's a bike friendly town I biked every day and when I was in the hospital I didn't think that I would get on to my bicycle again but luckily I did so in 2008 is when I got sick in 2009 is when I learned how to walk and then in 2010 I got on my bike for the first time and then in 2011 I became an internationally acclaimed cyclist come on as I figured out oh it is on sorry so it all happened really fast in 2010 I was getting on my bike for the first time I think it was my birthday actually was my birthday like two weeks ago and you know a couple years ago on my birthday I was on my bike for the very first time I think when I got home I cried a little bit because I never really thought that it would happen again just to have your hobby back into your life it's you know you realize what you take for granted anyway so after a couple more sessions of training I ended up at the Liz Strong challenge if you look in the photos in the bottom left that's me with a lot of other competitive cyclists being like what am I doing because I was a little overwhelmed never been in that scenario but when I finished across the finish line I was elated but I didn't know where else it would go to so a couple months after that I was in Oklahoma doing a time trial and who would have ever guessed the Oklahoma has the most intense hills ever I'm not taking I'm not kidding I'm like I'm going up the hill like this because I can't go straight it's so steep anyway so there's this guy there and he's asking me these questions about my bike and how it's adapted because obviously I have prosthetic legs and I don't have fingers so how do I break all of our brakes are on the other side of the handlebars we have our fingers to grab them right my brakes are on my side and I push into it that's literally the only difference I have with my bicycle and he's asking me that because he was a US Paralympic cycling coach and he's basically wondering how I would fit in or qualify on the team and he asked me if I wanted to go to road nationals and I said yes and I went and and I won in my own division which was pretty crazy the gold medal is seen in the middle picture and then after that I still didn't know what was gonna happen and he was like hey do you want to be on the US Paralympic cycling team and I said yes and and I went and in 2011 I was in Guadalajara those are the far right pictures I was in Guadalajara competing in the 2011 Parapan American Games no medals or anything but a lot of personal records which was great in high school I was on a lot of teams but when it comes to a US team that's a whole other stature and I never had a you know huge bag of you know USA red white and blue swag which was overwhelming and anyways so to be a part of that and to be a part of the team was I mean astonishing I never had dreams of being on the team and yet I found myself on the team and it's been wonderful currently not on the team the team just got back from Rio and a lot of them made gold and silver and bronze and I'm very proud and still follow everyone it's very interesting to watch the Olympics and see your friends on the commercials and stuff like that but yeah very proud of myself I definitely have high hopes but I will say which I never really discussed before in presentations Miniaturitis really exposed my limbs obviously when I had the necrotic tissue literally when you have necrotic tissue it is taking scabs off and it exposed my knees so I ended up getting severe arthritis and I'm about to have surgery on it which I haven't told my family right here but yeah so meningitis has definitely affected me in different ways I would like to get on cycling I after the surgery I know I will be on my bike within a couple weeks I'm like really not worried about it but it is exciting that I'm about to get healthier and look forward to my athletic career but going back so in 2009 we have a Jamie group made and it stands for Joint Advocacy of meningitis information and education quite convenient to acronym but yeah we've been presenting and advocating anywhere from a local perspective to state to nationwide to global any sort of platform or opportunity where I have the you know ability to speak about my story yes you know this group obviously knows what meningitis is but when it comes to the high school students one to five percent will raise their hand saying they know what it is and even in Texas this is actually really funny story so I used to Uber and Lyft like a year ago and during that process I'm obviously picking up students and a lot of them I'm like oh hey you got that vaccine right it's cool but a lot of them be like well I didn't know what meningitis is and another funny story I took summer school at ACC a community college in town and they're like hey you need to prove that you got your vaccine and I'm like okay but it was my law but the thing is all it said is you need to prove it it doesn't say anything about what meningitis is how devastating it can be so all these students that I'm picking up are like if I knew what it led to I wouldn't have argued I wouldn't have possibly done the opt-out opportunity so it's really great and important to spread the message and to relay the story of mine so moving on so when it comes to a global opportunity I had the wonderful chance to work with and get us and get us the world-renowned photographer from the 90s who took photos of the babies which were put in plants or put as butterflies and she's wonderful she's from Australia and I was given the opportunity I think back in 2012 to work with her and she took photos of meningitis survivors usually children I was the oldest one but I represented the United States and this photo was a platform for me to speak on a global level and here's the photo there it is I'm really modest about it actually I don't really talk about it much but they wanted me to be Helen of Troy in this scenario they wanted me to be a Greek mythical woman and they had me sit on the statue and yes I'm actually sitting on that statue a lot of people like are you what do you call it photoshopped oh my god I can't believe I forgot the word are you photoshopped on there I'm like no I'm totally sitting on that there's a stool on top of the head of it but yes it was a great opportunity really beautiful photo I've never really had photos done with my legs completely off but not like I'm embarrassed or anything I think a lot of people can guess that my legs don't finish but you know it really shows that meningitis you know while it is scary you know a lot of beautiful people survive and they live beautiful lives and I'm really happy to be a part of that and that was a couple years ago but this year working with GSK as a spokesperson which is new for me we had the opportunity to work with and get us again and in a sense of the theme of the Paralympics coming up she did another photo shoot with Paralympians who had meningitis and I'm gonna share a couple of them with you so this was done this summer so this is with Italy and she had these babies done with us and I really been part of a baby photo shoot honestly so there were like four babies on standby which was interesting but yeah I didn't meet all these survivors but I just want to show you the photos themselves this woman's from Brazil and all these different people were affected with meningitis in different ways obviously she has all of her limbs but she does walk with a limp I think she has a little bit of MS also because of just the side effects of it and this woman's from Canada another beautiful photo I mean look at all that hair on that baby's head and what was really awesome is that this like a month ago we were able to go to New York and have these wonderful photos displayed in Times Square on the Jumbotron again something I never really dreamed of happening to me I've been to Times Square many times and it is very overwhelming there and to have your photo being displayed up there I again another elated moment and I'm gonna share with you my moment that baby is two weeks old and and get us you know the mother of all babies you know coming in with her white gloves she just knows everything let me just say I've never held a baby before so she's like are you comfortable holding a baby I'm like yeah it's totally okay yeah I was a new experience but the photo came out wonderful having and seeing this photos go up onto the Jumbotron very proud of myself and that the message is getting out there and a lot of people who are just walking by were like oh my god that's y'all photos all the babies came all the survivors came and it was a great moment but all these great moments wouldn't have happened without you know everyone's work here in this room when it comes to meningitis yes I might put a face with a story but I think a lot of people don't give credit to y'all when it comes to the work that is put behind it I know there are a lot of nurses that get a lot of nose and crying and you all are all lifesavers it's not just me I mean what do I do I share my story and say don't don't let this happen to you but you guys are having maybe it's a routine work day and you don't really feel gratified but let me just say your work is full gratification I am very grateful to be working with such a great community who saves lives every day we are working for a better healthier and better society and I just want to say thank you there will be questions I think I have one more video I know a lot of people really know who this is but if you watch Pretty Little Liars which is a teen drama of today last year I worked with her to put out a PSA and we we traveled together across the U.S. and this is a PSA that's gonna load up right now and here we go my voice would be heard by everyone as a teen I felt that nothing can hold me back I dreamt about my future as a performer on stage but sometimes your future can change in an instant and alter your world forever that's what happened to me when I was diagnosed with meningococcal meningitis and my lower legs and fingers were amputated unfortunately teens are at increased risk for this rare but potentially deadly disease and millions of teens have not received the CDC recommended meningococcal booster vaccination that's why Jamie and I are joining teens to raise our voices for meningitis prevention I want to make sure everyone knows what I know now even if you've had the first vaccination talk to your healthcare provider about getting a second shot as early as age 16 now my dream is to help ensure no teen goes unprotected to learn about prevention and meet others raising their voices for this cause visit boostthevolume.com so that was a really great opportunity because she's has millions of followers that are teens those are the people we want to listen to us the fact are the fact is we get our primary dose at ages 11 and our boosters at 16 to 18 only 30% of people who are getting their first dose are getting their booster which is why it was called boost the booster campaign so it was a great experience just to meet all these teens all over the country who were active and getting protected but I think there are moments of questions if there are any and I like to give a good five-second countdown to opportunities of hands to be raised but nonetheless thank you for everything that you guys do here and for letting us have the opportunity to speak and we're really grateful to be here today and we'll be here if there are any other like shy questions but thank you I appreciate that hi good afternoon did anybody have any questions for Jamie or Patsy okay so my name is Monica Ortado and I am the program coordinator for ICSA and the one that sends you all those ICSA emails a couple times a week I wanted to I wanted to thank our partners and our exhibitors for making this conference possible I also wanted to thank all of you for being here and our speakers for sharing their knowledge and their experience with us also if anybody is interested in joining the ICSA coalition or if you have any questions about it I have my cards at the registration table outside of the outside of the hall feel free to take as many as you like we also have Jamie's DVDs out there and some of the books that Dr. Julie boom brought so please take this time to fill out your evaluation and we are also going to be recycling name tags we're really big on recycling so if you all have any questions please feel free to approach me or or any of our speakers thank you