Whitney currently works as the study coordinator in an applied laboratory that focuses on zoonotic disease research. She has an undergrad degree in Mircobiology, an MPH, and is currently a PhD candidate in epidemiology.
My posts are presented as opinion and commentary and do not represent the views of LabSpaces Productions, LLC, my employer, or my educational institution.
I'm a young researcher. I haven't yet been around the block. I've had one research job for the past 5+ years and that has mostly been spent coordinating influenza epidemiology studies. Only recently have I jumped into the deep end of the laboratory world to tackle the second part of my dissertation.
I know IRBs really well. I've lost count how many I've have to declare war against. I know IACUCs well enough to keep our lab kosher. I know funding agencies and the stress they love to evoke. I know how to convince random people that they should participate in my study - "Help a girl graduate, please!" I know phlebotomy well enough to actually get blood. I know how to coordinate an epi study like nobody's business. I know a random set of laboratory skills, even how to harvest influenza viruses from embryonated chicken eggs.
But why did I choose to do science and public health? Honestly, I chose science because of its cool factor. I thought microbes were fascinating and I wanted to learn as much as I could about them. I can pin point my love for infectious diseases to a specific life event - choosing to do an 8th grade book report on The Hot Zone by Richard Preston. To me, the Ebola virus was fascinating and throughout high school, I got my hands on every infectious disease piece of non-fiction literature I could find. But what struck me about Ebola, and what ultimately led me down my college career path, was the sheer fascination with infectious diseases.
But today... something was different about today. Today was the first time I got IT. I got why we scientists do what we do (or maybe more accurately, why I do what I do). Across the whole spectrum - from why I chose a career in public health, to why I keep repeating the same RT-PCR over and over with the same negative result. It's not because it's cool. It's because ultimately, scientific research and public health have a purpose. They have a purpose to enrich or protect people's lives. This "big picture" perspective may not play out in the day to day happenings of scientists, but that aspiration to help others is ultimately at the heart of everything we do.
So what happened today? What was so different about today? Today I met Kyle Lewis's dad, Jeremy Lewis.
A post-doc in our lab chaired a small meeting with CDC and Florida Department of Health folks to foster collaborations to research the deadly brain-eating amoeba Naegleria fowleri. I attended not because of my expertise or involvement, but merely because I found the parasite fascinating, and as a PhD student, I do not pass up a learning opportunity.
When the water temperatures get very warm (some say over 80 degrees F), N. fowleri emerges into its trophozoite stage and is detected in water. Humans are infected when contaminated water is forced up the nose (think of a crashing water skier). The amoeba travels up the nose, invades the central nervous system, and ultimately enters the brain looking for food. And it then slowly devours the brain using several sucker apparati that extend from the cell surface. In humans, this causes Primary Amoebic Meningoencephalitis (PAM).
The incubation time for PAM is 1-14 days, and once symptoms present, patients are dead in about a week. Early symptoms include headache, fever, nausea, vomiting, and stiff neck (and if you're thinking it, yes, these are non-specific symptoms common to whole host of diseases). Secondary symptoms include confusion, hallucinations, and seizures.
Amphotericin B, an anti-fungal drug, is effective against N. fowleri in vitro, and it has shown some effectiveness in vivo as well. The problem lies in getting a proper diagnosis in time. Because of the non-descript symptoms, other diseases, even pathogens that cause meningitis, are often considered first. Once the secondary symptoms appear and N. fowleri is suspected, it is too late.
In the over 100 cases reported worldwide, only one case, an 8 year old girl, infected in the 1970s, survived (Amphotericin B was injected directly in to her brain). According to the CDC, 33 people in the US died between 1998 and 2007. PAM disproportionately affects young boys. (This is presumably attributable to behavior patterns, as young boys are the ones more likely to be diving to the bottom, wrestling, cannon balling, etc, while swimming in a lake or river.) Infections most often occur in the summer months.
Because N. fowleri is detected in warm waters, PAM is often considered a disease of the warmer, more tropical US states. Texas and Florida have reported the most cases. But, in 2010, Minnesota reported the death of a 7 year old girl, which was the first ever case documented in a northern state.
A case of N. fowleri infection was featured on an episode of Monsters Inside Me (love that show!), and you can see a clip of that here, which includes neat video of the amoeba moving.
I need to insert a caution here: I am not fear mongering. This blog's intention is not to scare or alarm the public into thinking they can no longer swim in lakes and rivers. I'm merely discussing an interesting parasite that hasn't gotten much attention. Go on and swim, people.
So with that background of N. fowleri, a deadly brain-eating amoeba, I naturally go into my nerd state, and think how fascinating this pathogen is - to cause so much damage in such a short time. And up until today, that was all I thought whenever the post-doc would discuss her project with me. I would think how cool it was, this brain-eating amoeba.
So back to the conference... we sat down at the conference table and everyone introduced themselves. Leading N. fowleri researchers from the CDC, environmental and water safety folks from the Florida DoH, county epidemiologists, our lab group... then it was Mr. Lewis's turn. Six months ago in August 2010, his son, Kyle Lewis, was a healthy, out-going 7 year old preparing to the start the 2nd grade. He went swimming while on a camping trip with his parents, sister, and cousins. Ten days after that fun day at the lake, Kyle began experiencing headaches, fever, and nausea. Five days later, Kyle was dead. He had succumbed to N. fowleri. In the 6 months since Kyle's tragic passing, Jeremy and his wife Julie have created the Kyle Lewis Amoeba Awareness Foundation. They had no idea this fresh water parasite existed, so they are working to educate the public and help families become aware of the risks from swimming in warm fresh water lakes and rivers. Every morning, Jeremy puts on 2 amoeba awareness plastic bracelets. His goal is to hand those bracelets out to 2 people every day, to spread awareness one person at a time. He asked the CDC folks if he could attend this small conference to share his story with researchers and to put a face to N. fowleri. He knows he needs science to help him.
Simple prevention strategies such as staying out of warm fresh water (greater than 80 degrees F), or if you do still swim, keeping your head above water, holding your nose or wearing a nose plug, and avoiding digging or stirring up soil are easy public health messages to spread. Jeremy said their main goal is to instill a sort of "Amber Alert" when water temperatures are high enough to support the amoebic trophozoite. This public health alert would not close rivers and lakes, but rather allow the public to make conscious decisions and better protect themselves. I equate this to when public health departments release warnings about high coliform counts, or maybe like a jellyfish or shark watch at the beaches.
What struck me the most was Jeremy's passion, his commitment and drive to make a difference, and his realistic expectations. He was not another Jenny McCarthy. He was not casting blame. He was not fear mongering and trying to scare the whole world into not going near fresh water. He simply wants to spread awareness so others can protect their loved ones. I think the alert system is an awesome idea, if the research can be done to support it.
But, to have an effective alert, more research needs to be done. Right now so very little is known about N. fowleri, that a predictive weather model is still just an idea. And hopefully soon, N. fowleri can be considered in differential diagnoses, so when someone presents with the primary symptoms of meningitis, patients are immediately asked if they have had exposure to a fresh water body in the last 2 weeks. Currently, that is not being done, as most practitioners and ER docs are not aware of this amoeba's threat.
This meeting today just may be the foundation for some great research to come. I'm excited to see what happens. Not just because this is a cool bug and learning more about it is fun... but for Kyle, for the other people that have died, and for those deaths in the future that can be prevented.
Even though my thesis and my study coordinating efforts may not directly impact the lives of others, today, Jeremy Lewis helped me realize why I love science and public health so much... Why I wage the war against IRBs, tiptoe my way around IACUC, have that love-hate relationship with our funders, convince people to participate in my research, and re-do the same negative lab assays over and over and over again... it's because this is bigger than me. Bigger than our lab. Ultimately, in some extended way, our research will enrich and protect lives. Public Health is not a concept. Public Health is fathers, mothers, sons, daughters, sisters, brothers, aunts, uncles, cousins, friends, neighbors, co-workers and strangers. They need us. They need us to find the answers and to [properly] communicate risks and increase awareness.
I do this because it's cool. But I also do this because I want my life and my research to have a purpose. Jeremy had a fire in his belly. This drive to impact people's lives. The next time I'm frustrated that my virus refuses to grow after 10+ attempts, I'll think about that passion and remember why it is that I'm doing what I do.
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Very cool story. I get it. I like research I think knowledge is power for sure but for me I need a bigger picture something bigger than just knowing. I love things like disease research or alternative enrgy because you affect the world on a different scale.
The microbe is very interesting especially as you said with the high damage rate in such a short time. Is this something that frequents animals as well?
It's possible that mammals near fresh water, like beavers, could be infected... but there has been so little research done to know for sure. This meeting I went to just started to stratch at the surface of what is known about N. fowleri, and its ecology is definitely an important area for future research.
Awesome story. One never really thinks about public research and the consequences of "little" things, like an increase in the temps, until something like this happens to a boy like Kyle. For me, my research finally clicked when a friend's little boy was diagnosed with one of the rarest forms of bubble boy's disease, and while at the hospital he got sick with not one, but 2 viruses, one of which was at the centre of my thesis research. He was lucky enough to beat both infections, but there were nights when his parents wouldn't even sleep at the thought that something that usually doesn't make us too sick because we've been continuously exposed to it, could beat this little boy's failing immune system. Hats off to you for the story and for helping to raise awareness. And best of luck with your graduate studies :-)
When I was a grad student I did a rotation in a lab studying this organism and also Acanthamoeba. They are really interesting for sure. Nice post and good story!
cool blog... not sure i'd call it as much a blog as a short book, or mini grant proposal ;). Hope everything is well, Whitney!
Thanks Franco! It's great to hear from you. Hope all is going well with you too. We should catch up!
Thank you so much for posting on this and for your commitment to research in a time of serious funding issues.
I lost my son, Philip, to amoebic meningoencephalitis in 2009. I know about this post through Kyle's mom, who contacted me on FB. I'm faculty at USF Health, ID & International Medicine division. If you would please contact me about this project at firstname.lastname@example.org, I'd so truly appreciate it.
Your efforts are my one hope of finding some measure of peace now. Thank you, thank you, thank you.
Sandra G. Gompf, MD
Dr. Gompf, thank you for your comment. I am passing your info on to the post-doc who is leading this research.
Great blog! I became super fascinated with this amoebic parasite ever since I took a Parasitology course 2-3 years ago and then last year (senior undergrad) when I did a mock research proposol study on N. fowleri. I enjoy doing research which I've done in school particularly with the parasite Cryptosporidium parvum, but I'd love to get involved in a lab that is trying to learn more about the mechanisms of N. fowleri. Ever since I learned about the amoeba, I've even been thinking about intertwining my interest in the parasite with my ideal career goal of Physical Therapy. I would love to one day to rehabilite patients who generally have been victims of parasitic diseases but moreso survivors of N. fowleri. Since you had the opportunity to listen to people who are actively interested in developing research on this parasite, I wanted to know if you could steer me the right way. I definitely just started doing research and am no pro at it at all, but I am so interested in the issue and just a few months ago I got my Kyle Amoeba Awarness band in the mail, and wear it everyday.
I've been researching of how to get involved, even as a volunteer in a lab, but I'm not sure who to contact exactly, especially since this parasite is not well-known and what school or organization to contact. I graduated with a B.S in Biology, and I live in NYC. Any advice for me?
Very nice post for an actual problem. this is great. I ilke you style of writing!) I think if you would be at scholl you could to do my essay for me.
I just came to this site from Kyle Lewis Amoeba Awareness Foundation site where I read about Kyle. I am not involved in Science or any type of research. I'm a 59 year old granny and the idea of that happening to anyone is very sad. Especially since Kyle's family and those others who have died from it had no idea there was a possibility of something that deadly in the water. I realize it's considered a rare occurance but no one wants to find out after it's to late. I believe the CDC should do a public broadcast every year to educate the public of the possibility. No matter how rare it is. I can only hope they don't consider this an unrealistic request?
D. W. Kentucky USA