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 Charlene, Michele and Allison who co-lead the Saskatchewan Anaphylaxis Support Group (SASG).
Can you tell us a little about the Saskatchewan Anaphylaxis Support Group and how it came to be?
Charlene: I joined forces with Michele to start a Saskatoon support group, and it began as a private group on Facebook. It was through our shared challenges and successes, and Food Allergy Canada’s support that Michele and I were able to form our group, support others, and grow to 101 members.
Recently, we merged our group with the Regina support group to become the Saskatchewan Anaphylaxis Support Group. I am extremely excited about our merger and having Allison join as another co-chair; we now have a province-wide group that represents the many members who live in rural communities.
Michele: This merger brings together an abundance of support group experience, as the Regina group began in 2008 and the Saskatoon group in 2016. We are excited to share our collective experience and knowledge with our members.
Allison: It made sense to form one group as Saskatchewan has a small population that is spread over a large geographic area. Coming together we can combine our efforts to help support those living with food allergy no matter where they live in our province.
Please share your food allergy stories, who has them in your family, what are they allergic to?
Charlene: My son has multiple food allergies. He was diagnosed with food allergy at age three after an anaphylactic reaction that required hospitalization. Over the next few years, he was diagnosed with additional food allergies. Our family had to learn to live with his food allergies, and the lack of resources and emotional support at that time led me to start a support group.
Michele: My youngest child was diagnosed with a peanut allergy at a very early age. With limited information and resources available back then, I found myself searching for support and information on how to cope. At times, I was also struggling with overwhelming feelings of anxiety. I needed to find someone who I could talk to and who understood what I was going through – I was fortunate to meet Charlene. Through many conversations over the years, we discovered we had very similar thoughts on what access to credible and reliable information and education on food allergy could mean to people experiencing many of the same struggles as us. Having the opportunity to speak with someone who actually “gets it” when it comes to anaphylaxis and food allergy is so important. We also experienced a lot of disengagement and lack of understanding about the seriousness of food allergy within our school system in our province. We hoped at some point we could effect change within the provincial school system to acknowledge anaphylaxis as a medical condition. (Spoiler alert: read on to find out how they did make an impact in schools!)
Allison: I have two teenage sons with multiple food allergies. One is allergic to milk and egg, the other is allergic to fish and egg. As a Registered Dietitian, I was used to reading food labels and modifying recipes, but I was not prepared for the emotional and psychological aspects of managing food allergy. I started a support group because I desperately needed to connect with other parents who were experiencing the same issues and challenges.
What do you think draws members to your group?
Charlene: I think that members are drawn to the supportive atmosphere that is always positive and hopeful and is based on respect and credible information. We try to provide resources, support our members’ advocacy efforts, celebrate their successes, and provide a forum where they can support each other. It is such a relief when people find out that they are not alone in their struggles and that other people understand and support them.
Michele: We provide a safe and non-judgmental place for people to share their thoughts, struggles and frustrations. Connections with others who are going through the same process is so important.
Allison: Having food allergy can be very isolating. By joining a food allergy support group, you realize that you are not alone, and others are going through similar experiences. It’s a safe place where you know others “get it”.
How do you feel that your support group assists families in Saskatchewan in dealing with issues regarding food allergy?
Charlene: We help families in Saskatchewan in a variety of ways:
- Providing a safe place to connect with other people through our private Facebook group. Some of our members have made personal connections with other families and have met in person outside of our group, which is awesome!
- Hosting 3-4 meetings each year that cover topics which are member driven.
- Offering educational resources, information on high-interest topics, and a positive narrative.
- Promoting the initiatives and goals of Food Allergy Canada. In fact, we have held fundraising activities to support the efforts of the organization.
- Advocating on behalf of all families with food allergy in Saskatchewan.
In 2019, Food Allergy Canada reached out to us about participating in the consultation process for a new policy statement supporting students with medical conditions, including anaphylaxis, in Saskatchewan schools. One of the accomplishments that I am proudest of is our participation in this initiative. The May 2020 policy statement supports school-aged children in all school divisions within Saskatchewan. Along with Food Allergy Canada’s support, and the many parents advocating on behalf of their own children, we were able to bring about substantial change. Real change can happen through productive conversations, and this was proof!
Michele: For many of our members, managing food allergy and anaphylaxis will be ongoing. Our group provides the resources to live confidently with food allergy on a daily basis.
Allison: We also provide an outlet for our members to share their experiences and to ask others in the group for advice, if inclined. We direct members to sources of credible information, like to Food Allergy Canada. I believe is extremely important especially in this age of misinformation and “fake” news.
Where do you meet? How are you connecting during this time?
Charlene: We have held in-person meetings in school gymnasiums, leisure centre meeting rooms and even a pub! Based on attendance numbers over the years, we were moving toward digital meetings before COVID-19. We have found that many prefer this format, especially during the cold winter months in Saskatchewan! For example, we have hosted a Facebook Live meeting, other pre-recorded Facebook meetings, pre-recorded video meetings with guest speakers, numerous contests, and giveaways. We have also invited our members to participate in our fundraisers and attend advocacy events.
Michele: Knowing that our members have very busy lives our goal is to provide presentations and meetings in a pre-taped, shorter, and more concise format so that our members can view this information when time allows for them.
Allison: The Facebook group also allows for anyone living in rural or remote areas of the province to join our group and connect virtually with others.
Where can people find out more information?
Charlene: Find us on Facebook @Saskatchewan Anaphylaxis Support Group or send an email to firstname.lastname@example.org.
What advice would you give to someone newly diagnosed with a food allergy, or who is having a difficult time managing food allergy?
Charlene: My advice is to have hope. The initial diagnosis can feel overwhelming, and it is unimaginable how you will learn to cope and protect your child/yourself. You will learn how to adapt to a new normal and support your child. As a parent of a healthy, active teenager with multiple food allergies, I can assure you that eventually you will come to see that food allergy is only one part of your amazing child, not the whole part.
Michele: It is important to know that you are not alone. Credible and reliable information and education is available. Connections with others will give you and your family the support and tools to manage living with food allergy more confidently each day.
Allison: I would encourage them to explore the resources on the Food Allergy Canada website, and to reach out to a support group. It helps to talk to someone who understands and feels better to know you are not alone.
What advice would you give others who are thinking of starting an allergy support group?
Charlene: If you are considering starting an allergy support group, I encourage you whole-heartedly! The volunteer hours that I have donated to start and manage our group has been time well spent. Our group has provided me with a way that I could make the world a better place for my child and our family, and our members have given me the support and encouragement that I needed when trying to make a difference for all of us. Food Allergy Canada is also there to support you at every step of the way. You will meet the most amazing people!
Michele: Starting a support group might sound overwhelming at first. Having a co-chair(s) can make the idea more manageable. Forming a support group with the guidance and expertise from Food Allergy Canada has made the process much easier for me. We all have something important to say and share no matter how big or small it might be, and that what we say has the potential to help make life a little easier for someone else impacted by food allergy.
Thank you, Charlene, Michele, and Allison, for sharing your story with us!
To connect with Saskatchewan Anaphylaxis 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.
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