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Sorry not sorry – Why I’m calling out singer Natalie Grant

Saturday afternoon, a masto friend reached out to me.  She was upset about a Facebook post by a prominent Christian singer, Natalie Grant.  Ms. Grant posted the following to her Facebook wall on Saturday:
“Such a sweet time in Minneapolis at Women of Faith.  But now it’s on to LAX to continue filming the next episode of It Takes a Church.  And why yes, that is a battery operated essential oil diffuser that I’m using in my airplane seat.  Rocking the thieves oil and keeping the germs away.  And it’s helping the plane to smell much better #sorrynotsorry”
I groaned when I read it.  I actually groaned out loud.  I opened the thread to find mast cell patients commenting that oil diffusers can be dangerous for people like us, that they could trigger anaphylaxis. Grant’s fans argued that these people were just looking for something to complain about, that oils could never harm anyone, that you have to ingest a protein to have anaphylaxis.  The general spirit of their responses was that mast cell patients were just being oversensitive. 
That’s exactly right – but not the way that they mean.  Our bodies experience severe reactions to pretty much anything – and those reactions aren’t in our heads.  The fact that so many people commented that it was impossible for an oil diffuser to present a real health risk to others represents a serious danger to people like myself.  That is why the mast cell community found this so upsetting.
So let’s discuss why this is dangerous for people with mast cell disease.
Mast cell diseases are a group of disorders in which your body either makes too many mast cells, mast cells do not function correctly, or both.  Mast cells are the cells that are responsible for allergic reactions.  For normal people to have an allergic reaction, their body has to make a molecule called IgE that remembers it is allergic to something.  So people with peanut allergies have peanut IgE, and when they eat peanuts, the peanut IgE tells the mast cells to have an allergic reaction. 
People with mast cell disease pretty much skip this step entirely.  We have severe allergic reactions to things we are not actually allergic to.  This includes lots of foods, materials, environmental factors and others.  For some people with mast cell disease, these reactions include unpleasant symptoms that can be managed at home, like nausea/vomiting, skin reactions, headaches.  But some of us have severe, life threatening anaphylactic reactions based upon even very casual exposure to these substances.  These reactions require use of epinephrine (Epipens), IV antihistamines and steroids, and monitoring at the hospital to ensure that we survive.  People with severe mast cell disease can have several of these episodes in a year.  (I had three in 48 hours in May.)
To be clear: anaphylaxis can be fatal.  Mast cell patients are more likely to experience anaphylaxis and more likely to have severe reactions.  Our best protection is to avoid triggers and medicate appropriately, but this isn’t always possible.  Due to the rare and unusual nature of our diseases, there are few specialists worldwide so the vast majority of patients must fly to see them.  Hiding at home all the time with a mask on is both not practical and not an acceptable way to live. 
Every day, people with mast cell disease seek to minimize the damage to their bodies by avoiding triggers as much as possible.  In enclosed indoor spaces, this can be particularly difficult.  Once triggered, the only option is to medicate and end exposure to the trigger.  When flying, this is obviously impossible. 
While mast cell diseases are rare, fragrance sensitivities and asthma are not.  The CDC has stated that some risks of exposure to scents include asthma attacks, allergic reactions, headaches, migraines, sore throats, coughing, eye irritation, and other medical symptoms.  Asthma attacks can be triggered by fragrances in 72% of asthma patients.  Patients with multiple chemical sensitivity often have severe symptoms similar to those mast cell patients experience.  The fact that workplaces are gradually transitioning to be fragrance free environments is indicative of scent exposures negatively impacting the quality of life for many people. 
In an age of increasing allergies and allergic-type reactions, I find that people like me are often at odds with people who feel their personal liberties should not be curtailed.  Many people see this stand against the use of a personal diffuser as an attempt to impose the will of a suffering minority onto the population at large.  They are entitled to feel however they feel.  But as a mast cell patient, this is about allowing us to move as safely through the world as possible.  Is it worth feeling “infringed upon” to not use an oil diffuser in an airplane when it could kill someone?  Literally kill them?
Natalie Grant put up a follow up to the original post the next day.  While it initially looked promising, I was very disappointed.  It includes such gems as, “I am not here to argue about whether pure Young Living essential oils specifically, can harm those with this disease.” And, “I have a niece that is so allergic to peanuts, she can be in the front row of a plane and the person in the back row can open a bag of peanuts and she can go in to anaphylaxis.  However, EVERY TIME she flies, she has to inform the airline and flight attendents of her life-threatening condition.  May I make a suggestion to those who are suffering: be vigilant with airline employees.  DO not allow the plan to take off until the passengers have been informed there is someone on board who has a specific life threatening disease, so please do not use perfumes, lotions, oils, etc while on board the plane today.  No one will be a better advocate than YOU.”
This statement sums up exactly how much Natalie Grant is missing the point.  If I stood up in front of a plane and told people not to use anything scented, they would snicker and still use them because nobody believes we can actually die from a reaction to a scent.  When mast cell patients spoke up to point out that her use of an oil diffuser could be dangerous to us, we were mocked and shouted down.  We are advocating for ourselves.  The problem is that Natalie Grant, and her fans, just aren’t listening. 
And mast cell disease being dismissed publicly by someone with her sphere of influence?  Well, I’d venture my world is even a little bit more dangerous now than it was before Saturday.  So I’m calling her out.  #sorrynotsorry
A succinct presentation that sums up scent related health issues for the general public (along with list of references for above statistics) can be found here: http://www.slideshare.net/J_A_Miller/fragrance-sensitivity-awareness