Natasha Coates, 27, shared some details about her rare condition called mast cell activation syndrome (MCAS), which means that she is "allergic to strong emotions" and that even the tiniest changes in the normal state of her body could be life-threatening for her.
These changes could be brought about by sweating, laughing and even crying and could be fatal. She had already planned her funeral when she was 20.
Read on to learn how Natasha learned about her condition and how she adjusts to life with such a rare allergy.
Natasha's Story — Her Mast Cell Activation Syndrome (MCAS) Experience
Natasha admitted to The Mirror that even a simple night out with her friends could end up in a disaster. That is what happened to her years ago when suddenly she felt her tongue and throat swell up during a night out with her friends.
When that happened, one friend called an ambulance, while another used an EpiPen on her to stop her from choking and suffocating to death. She was comforted by her friends until she lost consciousness and awakened in an intensive care unit.
"I'm allergic to strong emotions. Any changes to my body's status quo - whether I'm laughing, crying, sad or stressed - can cause a chemical reaction," Natasha said.
Her attacks happen almost every day and she has been hospitalized over 500 times. She tries not to get upset when she feels it starting as it will worsen the reaction. According to her, her allergy is caused by the overproduction of histamine by the mast cells. Her body does it spontaneously even for no reason, making her allergic to nothing and everything simultaneously.
Initially, she thought she was just sensitive when she frequently got sick and had strange reactions to different foods as a child. But at age 18, she suddenly had an anaphylactic shock at a big public event where she felt shaky, dizzy, and had difficulty breathing. She was immediately brought to the hospital with a police escort.
She thought it was a once-in-a-lifetime reaction, but it happened eight times in two weeks. She found herself in an emergency room again.
At present, she deals with her condition at home regularly. She immediately gets help when she feels her tongue starts to swell. Her life was severely affected that she could only eat chicken, potatoes, and broccoli for months and became malnourished.
Also, her studies and gymnastics training suffered. She described her experience as a "modern-day torture" and admitted feeling like a "ticking time bomb."
Natasha is on medication and was diagnosed with mast cell activation syndrome two years ago. She is now living independently, although she has a personal assistant five days a week and an assistive technology that she can use to call an ambulance.
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What is Mast Cell Activation Syndrome (MCAS)?
According to the American Academy of Allergy, Asthma, and Immunology (AAAAI), MCAS is a condition characterized by symptoms of anaphylaxis. It happens when high levels of mast cell mediators are released during those episodes called "idiopathic," which means that the mechanism is unknown. In other words, the allergic reaction is due to an antibody or secondary to other known conditions that triggered the normal mast cells.
Diagnosis of MCAS begins with identifying the symptoms, as well as the frequency and incidence of those symptoms. Mast cell mediators could increase during each episode and be measured to see whether there are elevations.
Symptoms of MCAS are consistent with anaphylaxis, including rapid pulse rate, low blood pressure, syncope or passing out, itching, swelling, flushing, shortness of breath, diarrhea, nausea, vomiting, abdominal pain, and others.
For treatment, WebMD listed antihistamine medications that can block the chemicals released by mast cells. These can include first-generation H1 blockers, second-generation H2 blockers, H2 blockers, aspirin, corticosteroids, and monoclonal antibodies. Unfortunately, there is no cure for MCAS to completely stop the condition.
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