Susan (Heim) Kelly, BSN, RN
Founder of Food Allergy Life & Co-leader of  FRIENDS HELPING FRIENDS Food Allergy Support Group
FoodASC Member since 2016

 

Please tell us about yourself and why you are interested in food allergies.

My name is Susan Kelly. I am a registered nurse who works for a board certified allergist, as well as a food allergy mom.  Two of my four daughters have food allergic related conditions.  My oldest child has EOE and currently avoids gluten and dairy.  My second child has severe food allergies to peanuts, tree nuts, sesame and soy protein.

 

Please tell us about your website and business.

I am the Co-Leader of Friends Helping Friends Food Allergy Support Group. We are recognized by FAACT, The Food Allergy & Anaphylaxis Connection Team.  My Co-Leader is Georgina Cipriano.  Georgina lost her 14-year-old son, Giovanni, to anaphylaxis 3 years ago.  Working alongside Georgina has been a beautiful and fulfilling experience.  Georgina’s determination to keep Giovanni’s memory eternal by helping other food allergic families is truly inspiring.   Together, we manage a closed Facebook group for caregivers and those managing severe food allergies.  We also have a local support group that meets every couple of months on the South Shore of Long Island, in Nassau County, NY.

Susan and Georgina Cipriano at their annual support group’s Food Free Trunk or Treat Halloween Celebration

 

Describe a challenging experience you had related to food and your lessons learned.

A challenging experience for me was when my daughter was 3. She had an anaphylactic reaction after eating deli meat sliced on the same slicer as Mortadella, a bologna that contained pistachio.

I was shocked because I “thought” the food was “safe” for her to eat.  I never thought about the possibility of cross contact with tree nuts on the deli slicer until a later discussion with our allergist and the deli that confirmed our suspicion.

Nevertheless, the signs of anaphylaxis were clear.  She had a stomachache shortly after eating, then fell asleep and woke up panicked and screaming while scratching at hives on her neck.  Maternal instinct kicked in and I knew something was not right!

I doubted what I was seeing and immediately called her allergist.  He calmly instructed me to administer her epinephrine auto injector and call 911.  I did exactly what he said and the epinephrine worked.  I was amazed at how fast it stopped her reaction!

The first responders arrived and questioned my actions.  They couldn’t believe how good she looked and didn’t understand why I administered epinephrine if I wasn’t sure of what caused her reaction.  I was firm in explaining my actions.  They transported us to the emergency room for monitoring and the hospital staff reassured me I did the right thing.

From my challenging experience, I learned mistakes happen.  It’s how well prepared we are to handle our mistakes that really matters.  This is why it is so important to always have 2 epinephrine auto injectors readily available.  I also learned to never doubt myself, even if others do!  If I’m thinking an allergic reaction needs epinephrine, I will give the epinephrine.  When given early during a severe allergic reaction, epinephrine stops anaphylaxis in its tracks.  I saw it with my own eyes that day!


Describe a rewarding experience you had related to food allergies.

A rewarding experience has been realizing the strengths I have as a Food Allergy Advocate because I am both a nurse and food allergy mom. My passion and career have collided, motivating me to help others.

I truly believe food allergies are a public health concern.  Nurses have the ability to make an impact by educating everyone on the seriousness of this issue.

Food allergy education saves lives.

2017 Mayor of Lynbrook’s Citizen of the Year Award for Food Allergy Education & Outreach

 

What motivates you to do what you do?

What motivates me is helping others. When someone reaches out to me for food allergy support or to say thank you, I am truly humbled.

Watching my family become leaders in this area also inspires me to keep going.  My children are thriving because they have support, education and confidence in managing their conditions.

My wish for all families living with food allergies is to feel supported while developing the skill set needed to take good care of themselves and their children.

 

Do you have a go-to resource? If so, what is it and why is it useful?

FAACT is my “go to” resource. This is a great organization because they provide excellent support and education materials.  My children have attended FAACT’s Camp TAG, and have called it the best part of their summer!  Camp TAG has empowered my family to embrace food allergy life with confidence and has inspired us to help others.

Another resource I love is the AllergyEats app.  This app has improved our quality of life by helping us find food allergy educated restaurants.  We find this resource invaluable, especially when traveling.

Camp TAG Fun with FAACT’s CEO, Eleanor Garrow-Holding

 

What do you wish other people knew about food allergies and what’s one action that can be performed to increase knowledge and awareness in the general population?

I wish others would listen when someone says they have food allergies. The simple act of listening helps in understanding the everyday challenges of food allergy management.  It is frustrating and dangerous when people do not take food allergies seriously.

I’d like to see the media share factual food allergy education.

I’d also love to see the entertainment industry incorporate more characters in their storylines who manage their food allergies responsibly.

 

What advice would you give to someone just embarking upon this journey?

The advice I would give to someone newly diagnosed with food allergies is to take a breath. It is overwhelming in the beginning.  Realize this diagnosis brings about a grieving period, drawing a line between family life before and after food allergies.  Relearning how to safely feed your loved one or yourself takes time.  Give yourself the space you need to adjust.   Try not to think too far ahead, and come back to the present moment when feeling overwhelmed.   Seek support from your board certified allergist and trusted resources.  Above all, trust yourself.

Life with food allergies becomes easier with time.  There are ups and downs with each developmental stage, bringing new challenges.  No matter what, keep moving forward.  Food allergies are manageable when you are prepared and have a plan in place.  Do not isolate yourself or your family out of fear.  When I’m feeling stuck in a food allergy rut, I think of my favorite movie saying from Finding Nemo and “Just Keep Swimming!”

 

Is there anything else you’d like us to know?

I’d like to share my newly created blog where I write about my family’s experiences called, Food Allergy Life at momnursefoodallergies.blog   I am on LinkedIn, Susan (Heim) Kelly as well as Twitter ,Instagram and Pinterest @sheimkelly.

Thanks for taking the time to read my food allergy story.  It’s great swimming alongside all of you in this food allergy life.  We really have a compassionate community and I’m honored to be a part of it!

Thank you Susan for being part of our Member Spotlight!  Have any more questions for Susan? Ask them in the comments below.

 

Member Spotlight is our new monthly column in which we interview FoodASC members to highlight their businesses, publications and personal experiences.  If you are interested in being featured or nominating another member for the spotlight, please contact info@foodasc.com.

 

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FoodASC Member Spotlight - Susan (Heim) Kelly via @FoodASC.  Susan speaks of her terrifying experience after visiting the deli counter and lessons learned, the strengths she has as a nurse and mom, her

Leave a Reply

  1. Susan Kelly

    Thank you so much, Pattie Lerner, for your kind words. I’m sorry it has taken me this long to respond. Thank you for sharing your story as a nurse and mother of a child with celiac disease. You have done incredible work, as well as creating such a beautiful way to honor your niece with your company. We have a similar mission- making the world a safer, healthier and more inclusive place for those with special dietary needs.

    Keep up your good work!

    -Susan.

  2. Pattie Lerner

    Hi, great very impressive article!! My daughter was diagnosed with Celiac Disease in 2010. I am also a nurse and studied nutrition so as I navigated my way through her new disease, I found that what I knew about ingredients and nourishment there were very few options that would heal her damage. I then set out to make all her food. After that she said mom you have to feed all people with this disease because no one else can. With that I started a baking company for gluten and dairy allergies. After my store was open for a little over a year and listening to my customers requests I made to company 8 top allergen and more. Dye, gum, starch and preservative free. We only use real food with one ingredient in each ingredient. So we now cover most allergens and are school safe. So your children are safe with me. We source safe ingredients and no cross contamination because we don’t make anything else in our facility other then all allergen food and baked goods. We have cookie dough you can eat raw and bake. It’s amazing I believe it should be in all schools so all children can eat the same cookie no one is left out!! Please let me know if you would like some samples and if I can be of some help to you and your organization!! My company is called Sweet Megan Baking Co. in honor of my niece Megan who passed away in 2008 with a brain tumor we wanted her to live on as we are on a journey to make the world a safer and healthier place for everyone!!
    Thanks,
    Pattie Lerner

    1. Donna DeCosta Listing Owner

      Hi Patty,
      I’m so glad that you like Susan’s interview. Thanks for telling us the story of your bakery. Your baked goods look delicious and the lavender cupcakes are beautiful! Wonderful that your bakery is top 8 free, great to know. What a lovely way to honor and remember your niece.