Honestly, I get that it is a threat.  My husband is an ER doctor in an urban ER.  His risk is higher than almost any other profession.  The signs outside the ER (typed and stuck on a sandwich board) say to report any exposure or risky travel.  He has been briefed and rebriefed on what to do when a potential patient arrives. IF a potential patient arrives. Those Texas health care workers fresh on everyone's minds.  He recently told a neighbor that if he saw a potential Ebola patient, he would sleep in the basement, just to be safe.   I coughed, "You mean the Super 8."  No, I don't want to be anywhere near the fear, or the disease, either.  

 

But, what I understand better is that there are health threats everywhere and it just about kills me listening to the news talk about Ebola like it is the END.  A new disease is disconcerting. It warrants precautions and CDC evaluation. It warrants a bit of caution about travel and preparation by health care workers, just in case. 

 

As the parent of a 9-year old daughter with 22q11.2 deletion, I feel like I live day to day with REAL, ACTUAL immune fears, instead of media driven panic.  Like many parents of kiddos with this deletion, we have checked off the list of more medical issues than I care to share, but the one that causes us the most angst, perpetual worry (and sometimes, yes, frustration) is the immune deficiency. When our daughter, Nadia, was 8 weeks old, we were told that she had a rare form of 22q11.2 deletion, called "Complete DiGeorge,"  which meant she had no thymus, the gland I'd never heard of, but that trains and develops T-cells, an important type of white blood cell.  We locked down and researched doctors to help do a thymic transplant, which would allow her a chance to survive, even without her own thymus.  We wished the world would all wear those Ebola ghostbuster suits so our daughter would be protected.  We got to know other parents whose lives were in bubble mode.  Isolated in units at Duke instead of Emory, but for fear that the world would contaminate their little ones, instead of vice versa.  Like a knife in our already open wound, our toddler wasn't allowed anywhere near our sick baby girl, for fear that he, too, was too germy.  Everything went into slow, automated, motion and the world went dark, except for the little bit of light that crept under the door. Patients that survived transplants.  Cutting edge researchers. 

 

And then, we learned that our daughter, thank heavens, had some thymic tissue somewhere, and that her immune system would be enough to get by. With caution.  With vigilance. With a little help from the big wide, germy world.  With others getting vaccinated so that the herd immunity would keep my unvaccinated daughter safe.  With people not going out into the world with whooping cough. Not boarding planes with racking coughs and fevers or shopping at the market with Swine flu (remember that?). Not sending their kids to school with contagious illnesses.

 

Instead of worrying about an Ebola patient on another continent or half a country away, we prayed that our daughter's paltry 12% of her immune system would be enough to allow her to experience all that we hoped for her to see and to participate in life.  I nursed her for four long years to share my immune system; I cancelled flights when outbreaks of viruses hit the news; I withdrew her from preschool November through March; I had holidays abruptly cancelled when family members came down with a cold; I had groceries delivered so that I could keep her safe.  I had and have real concerns about infectious diseases because I have a daughter to protect and to be honest, the general public only seems to care about keeping disease away when it is the disease du jour.  Communities obstain from vaccines because it is popular to do so.  Almost trendy.  Parent blogs and Facebook posts tout countless reasons to not vaccinate.  And I sit and worry.  Because we can't vaccinate and we count on the public to protect us.  If I'm honest, I'll admit to feeling angry at the irony of a public that calls the risk "too low" to vaccinate for many preventable diseases, who chooses not to get flu shots, but that is literally up in arms protesting a disease whose risk is nowhere near their doorstep.  

 

Twenty-two percent of Americans say that they are worried about getting Ebola, according to Gallup.  I wonder what the polls would say about whooping cough.  According to the CDC, from January through August, 2014, roughly 17,000 cases of pertussis (whooping cough) have been reported in the US, a 30% increase compared with the same time period in 2013.  In 2012, there were 20 pertussis-related deaths and there were the most reported cases since 1955. Do you know why there aren't polls about pertussis and a constantly rolling stream of discussions on what to do to stop the spread, on how to protect our children or elderly? Because the public gets to choose which diseases to freak out about and the ones that have vaccines and prevention measures don't grab their attention like the fancy new ones… even though they ARE in our neighborhoods and schools.  As the parent of a child with immune deficiency, I don't get to pick and choose which diseases to panic over, because every day, there are risks for my daughter and I have learned how to manage those risks and how to do my best to keep her safe.  But, it isn't easy.  It isn't always comfortable or popular.  It isn't always fair. 

 

We are exceptionally grateful that Nadia participates in life with such zest and joy that wherever we go, whether it is a park to hunt icicles on a frigid winter day to avoid germy libraries and classrooms, or a Mustard museum to avoid the throngs of coughing kids at the Children's museum, she makes it seem like we have just discovered the next best thing.  She is understandably sad at cancelled playdates, when they come down with a runny nose and cough, and I have to (awkwardly) tell that parent that we will have to plan for another day, but she rebounds in no time and is so easily entertained that sometimes, it makes me wonder why we have a stuffed play room when she might rather build a marshmallow and toothpick village.  

 

As someone who has spent the last decade trying to decide when to take cover, when to hunker down, which people are "safe" to play with or board a plane with or to sit next to at the theater, I would like to tell you with certainty that I, too, am concerned about Ebola.  But, I am more concerned about the risks and diseases that are in our community.  Every day.  Now.  They affect sick and immune compromised kids, babies and adults in our communities.  We just don't have the media to show us their pictures in hospitals.  In NICU's.  In their homes because they are have to be careful to go out and about, with the public, the ones who carry the viruses and don't seem to give a second thought about carrying them in the community.  I hope that the spread of the Ebola virus is stopped in its tracks. But I also hope that the fear and panic stops, too. At least long enough for the media to focus on actual health risks, incredibly important vaccines and preventable diseases that the public fails, CHOOSES, not to prevent.  My daughter would be ever so grateful, and as her germ "body guard," so would I.