We are proud to partner with support group leaders and community advocates across Canada to serve as local resources for individuals and families living with food allergy.
This month, we feature Pam Isaak, who leads the Niagara Food Allergy Parents Support Group.
Can you tell us a little bit about your background and how the Niagara Food Allergy Parents Support group came to be?
My name is Pam and I am a busy mom of three kids – Nolan (11), Brooklyn (9) and Ethan (6). I live in St. Catharines and work at Brock University in career education.
My youngest son, Ethan, was diagnosed with a milk allergy at 10 months of age in 2014, and for the first few years of his life I struggled to support his safety. I felt uneducated about anaphylaxis, cross-contamination and how to manage social gatherings like parties and holidays. I had so many questions, and very little support. I continued to hope he would grow out of his allergy, visited the allergist yearly and in the meantime navigated the continual challenges of food allergy with mounting anxiety.
In 2016 my daughter Brooklyn was diagnosed with childhood cancer. My husband and I were very fortunate to discover a strong community of parents who were also navigating the same journey and I realized how important peer support and lived experience was to help us cope. It was very validating to meet other parents struggling with the same challenges and fears. I wondered then, if I’d ever find a food allergy community as helpful as the childhood cancer community.
Once my daughter was cancer-free and our life returned to relative normalcy, I knew I needed to educate myself and my family more about Ethan’s food allergy. I began searching for support groups, Facebook pages and organizations that could help. I found Food Allergy Canada and spent hours reviewing their resources online. I was so relieved to read credible, supportive accounts of life with food allergy.
I began the Niagara Food Allergy Parents Support Group in late 2018 with the hope of connecting with other parents navigating the world of food allergy. I wanted to share valuable resources like the Food Allergy Canada’s ‘newly diagnosed handbook’ so that other families would not have to struggle the way ours did. I knew that I could share my experiences – good and bad – as a mentor to other parents, and I hoped there would be others who could help me navigate new challenges like advocating for accommodations at school.
What do you think draws members to your group?
I hope that what draws members to our group is a genuine sense of support and fellowship. My goal is to encourage parents to feel comfortable asking every question, sharing great evidence-based resources and encouraging others to advocate for the needs of their children. There’s so much we can learn from one another.
How do you feel that your support group assists families in the Niagara area in dealing with issues regarding food allergy?
Members share their experiences in our private Facebook group and parents brainstorm solutions together. Sometimes a member just needs to vent about a bad day, or share their thoughts, and doing so helps all members normalize life with food allergy. We also meet in person every couple of months in a free community room thanks to PenFinancial Credit Union. It’s very helpful to spend time together, and it’s an awesome way to share Food Allergy Canada print resources!
Where do you meet?
Every few months, on a Friday night beginning at 6:30pm in St. Catharines (Fourth Avenue PenFinancial Credit Union). Niagara parents are also welcome to join our private Facebook group. Details regarding all meetups are posted in advance via Facebook Events.
What advice would you give to someone newly diagnosed with a food allergy, or who is having a difficult time managing food allergy?
If your child has been diagnosed with food allergy, take every opportunity to educate yourself. Pick up or download a copy of the newly diagnosed handbook, participate in webinars, get educated through Food Allergy Canada’s website, and follow credible Facebook groups to learn all about the ins and outs of life with food allergy. Teach your child how to be vigilant, but not afraid of food. Help your child ask the right questions, model good hand hygiene and always pack lots of safe snacks wherever you go. Bring their EpiPen® everywhere, order a free trainer and practice regularly with siblings and grandparents.
Finally, understand anaphylaxis! Take the free AllergyAware.ca course and require all caregivers to take it as well. Keep a copy of the signs and symptoms of anaphylaxis or a Think FAST poster on your phone and fridge for reference.
What advice would you give others who are thinking of starting an allergy support group?
It’s worth it, and Food Allergy Canada can help you get started! Start small with a Facebook group to your community started. I patiently watched as we grew from 2 to 77 members in one year by word of mouth only!
Is there anything else you’d like to add about leadership, the support group, Food Allergy Canada, or living with food allergy?
I am so grateful to Food Allergy Canada for providing such amazing resources to families. Also, a HUGE SHOUT OUT to Kyle Dine, his songs and DVD have been instrumental in helping Ethan truly understand his allergy and how to stay safe. I highly recommend his music…especially “Food Allergies Rock!”
Thanks Pam for sharing your story!
To connect with Niagara Food Allergy Parents Support Group or one of our other support groups, visit our support group page. If there isn’t one in your community, we’ll help you get one started.
Tags: support group, Support groups