May is Allergy Awareness month so we thought it would be an appropriate time for our family to share our story of living life with a family member who has a life threatening food allergy.
At age two, after some routine testing, we received an urgent personal phone call from our doctor . . . on the weekend . . . while on holiday. What took only a few minutes for her to explain, took months for us to understand and come to terms with. Our daughter Anna was diagnosed with a severe and life threatening allergy to peanuts and tree nuts. We purchased EpiPen auto injectors that same day, and spent the rest of our holiday learning everything we could about her allergy and how we could keep her safe.
In those early weeks, we didn’t yet fully understand how much all of our lives would change as a result of Anna’s allergy. We wondered if we did anything that could have caused her allergy. We wondered if there would ever be a treatment or a cure. We worried if she would be treated differently, or even teased and bullied. But most of all we felt saddened by the fact that Anna would have to keep her medical condition in the forefront of her mind every minute, of everyday, for her entire life. It was a heavy sense of responsibility for all of us, and something against the grain of the “care free” childhood we had hoped for her.
We are now experts in explaining that the tiniest trace amounts, whether ingested or simply in contact with the skin, can trigger an anaphylactic response, causing the airway to close, blood pressure to drop to dangerous levels and within minutes could lead to shock and possibly death. However, dealing with how this information is received remains challenging.
Over the years we have experienced some uncomfortable situations where people just didn’t understand the severity of her allergy and its life threatening consequences. The most painful was when close family members or good friends downplayed the issue, or challenged the reality of her allergy. A family member once insinuated that people with such conditions should stay home rather than go to school in order to stay safe and not inconvenience others. It was a defining moment for us. We felt even more isolated and sad. We did not want to be a burden to anyone we just wanted our daughter to be safe and fit in.
Since learning of Anna’s allergy our family has definitely become more knowledgeable and confident about living with food allergies. We are diligent about label reading. Every label is read more than once, normally by more than one person. Even if we bought a product 100 times before, we always read the label of every new package . . . because manufactures make changes, and the implications of missing that change could be devastating. Additionally, because manufactures make mistakes, any food that she takes with her, to be eaten outside of our presence, is from a batch she has already eaten from in our presence. Eating out is particularly challenging and therefore done with great caution and usually at trusted establishments where we have developed a relationship with the manager and staff. Even so, every time we dine out we talk with several members of the staff to explain how her food has to be prepared.
Anna’s classmates and teachers at Ellsworth Hill have been very gracious and understanding in packing nut free snacks for their children while at school. This support has been incredible, and our thanks go to each and every one of them as we know it isn’t always so easy to say “No” to a child who wants their favorite food for a snack, or to spend the time and energy to assure what you are sending is safe.
Anna is still young and requires our vigilance, however as she learns and understands more about her allergy, she is becoming a stronger self-advocate. We strive to be positive and live the best life possible.
We hope when people understand the severity and potential implications of food allergies, checking the label on a pack of granola bars to make sure they are nut-free will make more sense. We hope sharing our experience in this article helps people to better understand food allergies, and also puts a face and a family behind the term, making it a bit more personal than something you may read elsewhere.
Some Food Allergy Facts
Peanut and tree nut allergies are one of the most common food allergies. Both can cause a severe, potentially fatal, allergic reaction (anaphylaxis).*
Allergy to peanuts appears to be on the rise in children. According to a FARE-funded study.
Peanut and tree nut allergies tend to be lifelong.*
Trace amounts of peanut or tree nuts can cause an allergic reaction.*
Two studies from the USA and UK have shown that peanut allergy doubled over a 5 year period. Peanut allergy is estimated now affect 1 in 50 young infants, and tree nut allergy also seems more common. There are many theories as to why this increase has occurred, but at this time, we have few answers. **
Fact Sources: *Food Allergy Research & Education, (FARE); **Source, The Australasian Society of Clinical Immunology and Allergy (ASCIA)