This month, we were delighted to have the opportunity to interview not just one, but all three co-leaders of the Metro Vancouver Anaphylaxis Group. In the following interview, Stephanie von Dehn, Elaine Hsu Wardley, and Sarah MacKinnon tell us all about their support group and the communities it serves.
Tell our readers a little bit about the Metro Vancouver Anaphylaxis Group. For example, what led you to join the group in the first place, how and when you became group leaders, and approximately how many families you serve.
Metro Vancouver Anaphylaxis Group (MVAG) was started in 2009 by Robbyn, a Vancouver-area food allergy mom. Elaine was put in contact with her and became co-coordinator. A mom of two children with food allergies, Elaine found the early stages quite overwhelming, so she jumped at the chance to meet other people in the same boat, and share information. Robbyn had great ideas for getting people together, so there were some fun adult-only, as well as family-friendly, events those first few years. She also created a website with a lot of great information and resources, but unfortunately she became busy with work and other volunteer commitments, so Elaine recruited Stephanie to be a co-coordinator in 2010.
Stephanie joined the group in 2009 when she was seeking support and feeling overwhelmed with the many practical and social challenges involved in raising a child with multiple food allergies (dairy, egg, peanut, tree nuts, mustard, FPIES to salmon) as well as asthma, eczema and environmental allergies. She also has a husband with celiac disease, so she is well versed in managing multiple chronic health conditions (and in how to cook and bake allergen-free foods!). Her former career as a medical social worker lent itself well to helping to lead and moderate the support group.
Sarah, a mom to two children with food allergies, joined the group in 2014, and became the newest co-coordinator in 2017. She spent a couple of years after the first diagnosis stumbling about not knowing what she was missing, and was happy to find the MVAG and get up to speed. We like to call her our resident writer/editor/proofreader. She is also passionate about helping consumers with food allergy navigate the often confusing landscape of pre-packaged food labels.
Now, most of the group’s “activities” are via Facebook. Since people are already checking Facebook regularly to keep in contact with friends and family, it’s easy to stay connected via the MVAG page. We currently have over 370 members on Facebook, and perhaps another 50 members who are not on Facebook. We send out information on upcoming events to these members also, but unfortunately, they are not generally involved in the group discussions. With the support of the Food Allergy Canada, we try to hold face-to-face meetings, typically with an educational component, once or twice per year.
We have held sessions on communicating effectively with your child’s school, coping with anxiety, and an ask-the-allergist session with Dr. Chan from the B.C. Children’s Hospital allergy clinic. We would love to hold more frequent meetings, but given everyone’s busy schedules and the large geographical area that our membership comes from, it can be difficult to make this happen. The Facebook group is such a great way for people to help one another that we encourage people to consider using Facebook, even if they just create an account for the sole purpose of engaging with MVAG members.
What do you think draws members to your group?
Our group’s members are amazingly supportive and knowledgeable. It truly is a tightly-knit community of individuals with food allergy, and parents/caregivers of children with food allergy. Members are so wonderful at offering help to others who are experiencing similar challenges they have already dealt with. Our members know that even if spouses, teachers, friends, or family don’t “get it”, they have a safe place to ask questions, complain, and vent in our group, because the people there do “get it”. Obviously everyone deals with allergies differently, and this sometimes sparks debates, but group members treat each other with respect and understanding, and the differences lead to opening people’s minds rather than conflict. Members can count on others responding to their posts with queries or comments almost instantaneously. The other great thing is that among those who respond, the voices are varied and offer alternative points of view.
How do you feel that your support group assists families in the Vancouver area in dealing with issues regarding allergies?
In addition to the above comments about our group, members from different neighbourhoods or school districts offer advice and knowledge to others who are looking for ways to manage allergies at school, or suggestions for nearby restaurants, allergists, and grocery stores. We also have group members from cities where there is no support group, or where there is one, but they like ours better! Having adults living with allergies and parents of children with allergies in the same group definitely offers some differing perspectives. Not only do the adults living with allergies share invaluable experiences with each other, but they also give parents insights, as well as hope for their own children’s future, which helps balance the discussion.
What advice would you give others who are thinking of starting an allergy support group?
There should be some basic online guidelines that members agree to. Sometimes there are contentious issues that cause conflict, and sometimes there are abrasive personalities who contribute to conflict. It’s good to have some ground rules so you can moderate discussions more effectively and ensure the group remains a safe place for people to talk about their challenges and triumphs, and to share information. It is also important to ensure that your members understand that sharing information about food products and restaurant recommendations can be a helpful way to start gathering information, but each family must always ensure that they do their own research, and ask their own questions of manufacturers and restaurant servers, etc. Everyone manages allergies differently and has different comfort levels, so there is not a “one size fits all” approach.
We also try to encourage people in similar geographic areas to have informal meet-ups so they can make connections beyond Facebook. Another recommendation would be to have multiple coordinators to help with the work load of screening of new requests (to rule out spammers!) and to share the responsibilities of answering questions that haven’t been addressed by other members. Each coordinator has their own passions and areas of expertise to share, and this helps the group to run smoothly.
Is there anything else you’d like to add about leadership, the support group, Food Allergy Canada, or living with food allergies?
Living with food allergy, whether it’s your own allergies, or those of your children, is a hard road, and the extra work and anxiety never fully go away. Our group makes things a little easier, and we are so grateful for all our members who contribute their knowledge, expertise, and support. There are so many different challenges that come along with all the ages and stages in life, and there is always someone in the group who can share what they have learned along the way to make things a little easier to deal with. It is so great to be able to share knowledge so that another person’s journey can be smoother. The amazing kinship that allergy folks have with each other is something special to witness. As co-coordinators we have been lucky to develop a strong bond with each other while sharing our passion of helping others!
For more information on support groups, how to find one or set one up, visit our support group page.