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 Carla and Annie who co-lead the Montreal Allergy Support Group (MASG).
Can you tell us a little about the Montreal Allergy Support Group and how it came to be?
Carla: I became the leader in 2013, when the founder of the MASG, Andrea Lobel, moved away from Montreal. I originally hesitated to volunteer because I had no background or training for this role. What could I possibly offer? I was struggling to deal with my then 4-year-old’s multiple allergies and his 1-year-old little sister. I was a novice in allergy management, so what guidance could I provide to others? I volunteered to be the new leader when I realized that I didn’t need to have all the answers. In the same way that I was looking for a connection to people who understood the food allergy journey when I joined, that is what others would also be looking for. Not someone to tell them how to cope, but a group of people who could relate to the joy of finding a safe food or restaurant and the frustration of having to explain allergies for the thousandth time.
Shortly after I took over as leader of the MASG, Annie joined the group and was instrumental in helping me get the group mobilized. Together, we created a bilingual website and a Facebook private support group. In 2021, after some time away from the group, Annie is back as co-leader and together we will revamp our resources and reinvigorate the MASG.
Annie: I joined the MASG in 2013, after my oldest son, then 2, experienced anaphylaxis for the first time and felt the need to connect with other families going through a similar journey as our family’s. I was desperately trying to find the right balance between a life led with fear and a careless approach to allergy management. I met Carla through an in-person meeting she had organized with the MASG. For 4 years subsequently, I volunteered alongside Carla for Food Allergy Canada, while also hosting several in-person meetings with the Allergies Sans Soucis support group with another food allergy mom, Loane Ouellet. I took a break from organizing in-person meetings in 2018 when my third son – who also has FPIES and food allergies – was born. With 2020’s pandemic, the in-person meetings have become impossible to host, and Carla kindly asked if I wanted to give her a hand managing the MASG online community and platforms. It is my pleasure to take on this new role starting 2021!
Please share your food allergy stories, who has them in your family, what are they allergic to?
Carla: My eldest son, who is now 12, was diagnosed with multiple food allergies as an infant. He was first diagnosed with allergies to wheat, dairy, and eggs following an anaphylactic reaction at six months old when I was introducing solids. At 3 years old, he was diagnosed with allergies to tree nuts, shellfish and peanuts so I was a little overwhelmed. When I joined, I was looking to connect with others living with allergies to learn how to manage our daily lives and to connect with people living a similar experience.
Annie: My oldest son, Thomas, is now 9 and has multiple food allergies. Like Carla, he was diagnosed very early, while introducing solids. He has allergies to soy, peanuts, legumes, mustard, sesame, kiwi, and several other foods, and also has asthma and eczema. My youngest son, Noah, is 2, and has FPIES to oats, rice and milk. My middle boy, Elliot, has no known allergies and can eat whatever he wants!
What do you think draws members to your group?
Carla: Establishing connections with others on the same food allergy journey and knowing that you are not alone.
Annie: Finding a safe place to express emotions – good, bad, or ugly – only other allergy community members can understand while also finding reliable information to help better manage this condition.
How do you feel that your support group assists families in the Greater Montreal Area in dealing with issues regarding food allergy?
Carla: Whether they are venting about a frustrating experience or sharing a “food allergy win”, they know that this community will understand their frustration or their joy because they have felt it too. When you excitedly share with someone who does not live with food allergy about finding a safe food, they just do not understand the feelings of joy, wonder and excitement that comes with this discovery. In our group, you are connecting with people who get it.
Annie: It’s very rewarding knowing that the community we’ve knitted is providing support to its members and is making daily management somewhat easier.
Where do you meet?
Carla: Our community connects online via our private Facebook page. This allows our members to obtain support when they need it. We are not currently having meetings.
Annie: I couldn’t be more excited to start expanding our community again and hopefully organise a meet-up when the situation allows.
Where can people find out more information?
We have a website, allergiesmontreal.weebly.com, but mostly of our information and community is on Facebook. We have a Facebook page where we share general information and news on food allergy, as well as a private page where members can discuss and ask questions in a safe and judgement-free environment.
What advice would you give to someone newly diagnosed with a food allergy, or who is having a difficult time managing food allergy?
Carla: Connect with others so you don’t feel isolated and get the right information. Accessing credible information that will help you through the ages and stages of your child’s food allergy is key in managing confidently and reducing anxiety levels. (Check out our practical and credible information and resources for parents and caregivers of children with food allergy.)
Annie: I would say that it’s okay to have days where it’s harder, and it’s okay to feel overwhelmed at times. There are many resources accessible, and one of MASG’s mission is to help disseminate those reliable resources to families who need them.
What advice would you give others who are thinking of starting an allergy support group?
Carla: Don’t be afraid; take the plunge. No one is expecting you to be a food allergy guru. Food Allergy Canada has a wonderful team that can help you get started and a great network of support group leaders who can share their experiences.
Is there anything else you’d like to add about leadership, the support group, Food Allergy Canada, or living with food allergy?
We are so grateful to Food Allergy Canada for supporting the leaders of support groups across the country. Due to this wonderful organization, support group leaders like us have credible information to share with members, a sounding board to help us to help our members and keep us up to date with the latest news in food allergy and the actions we can take to help make living with food allergy easier for our families.
Thank you Carla and Annie for sharing your story with us!
To connect with Montreal Allergy 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 profile