By Andrea D. Lobel
Food Allergy Canada is proud to partner with support group leaders across Canada to serve as local resources for individuals and families living with food allergies.
I recently interviewed Carla Da Silva, who generously took over leadership of the Montreal Anaphylaxis Support Group (MASG) from me in 2013, after I moved to Ottawa. By stepping up, Carla ensured that the group would continue to be there for Montrealers.
Andrea: Please tell our readers a little bit about the MASG, and how you came to be involved as a member, and later, as its leader.
Carla: I originally joined the MASG about a year after my eldest son 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. He was later diagnosed with allergies to tree nuts, shellfish and peanuts at three years old. 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.
In 2013, the founder of the MASG [you] moved away from Montreal and was looking for a new leader. I had no background or training for this role, so I hesitated to volunteer. What could I possibly offer? I don’t have any answers given that I am a novice in allergy management, so why me? I volunteered to be the new leader when I realized that I don’t need to have all the answers. I only have to serve as a guide to the right answers, as the thread that connects families with allergies in our local community.
When my family was newly diagnosed with allergies, I was not looking for someone to tell me step-by-step what to do. That was not what the members of the MASG wanted from their leader either. I wanted a community of people who “got” it, who understood the implications of living with food allergies. I needed the mom of a teenager with allergies to remind me that I would make it through the toddler years, or kindergarten. That’s all I do—maintain a group that provides those connections.
Andrea: What do you think draws members to your group?
Carla: Knowing there are others in their local community who understand what they are living with daily is the biggest draw to our group, to any support group. I am so blessed to have a wonderful network of family and friends who were supportive from the beginning. However, they could empathize but they did not fully grasp the full impact of such a diagnosis. Only someone who walks in those shoes can understand the scope of such a change to a family’s way of life. That’s what members are looking for when they join our group, a community of peers going through the same journey. The sense that “I got through this milestone, so will you. Here are some tips from my experience.” Support groups give you hope when you are down and share your excitement when you discover a safe food.
Andrea: How do you feel that support groups assist families in the Montreal area in dealing with issues regarding allergies?
Carla: Support groups help families with the emotional aspect of living with allergies. Our role is not to provide medical advice or to help diagnose an allergy or treat a reaction. Support groups help families learn to go through daily life—eating out, going to parties, attending school, etc. Many families leave the allergist’s office with an epinephrine auto-injector prescription and the knowledge that the allergen must be avoided. Once that sinks in, they have questions about entrusting their child to a caregiver or how to inform the school. The list of questions is long and evolves over time as we reach different milestones. A support group can help with those issues as the members have often been through similar experiences and can provide guidance based on what worked for them as well as the mistakes they may have made.
Andrea: What advice would you give others who are thinking of starting an allergy support group?
Carla: Don’t think you need to have all the answers and don’t get discouraged.
It isn’t crucial to have all the answers, but being able to refer families to sources of credible information, like Food Allergy Canada, is the key to my success.
Early on I was tremendously disappointed when we had limited participation in our activities. It seemed vital to me at the time that we have large numbers, as if that was the sole indicator of success. I had to take a step back and reflect on why I was involved in the support group to begin with. It was simple, I wanted to help make the journey easier for at least one family and I wanted to share ideas with others in the same boat as I was. Based on that indicator, my first meeting with three other families was a HUGE success. Many of our members don’t need monthly in person meetings to feel like they are connected. That’s okay. We, as a group, are there for them when they reach out, and that’s what matters most.
Carla Da Silva is a CPA, mom of two, and the leader of the Montreal Anaphylaxis Support Group.
Andrea D. Lobel is a writer and consultant. She founded and led the Montreal Anaphylaxis Support Group from 2003 to 2013.
For more information on support groups, how to find one or set one up, visit our support group page.