1. The Ultimate Sounding Board
Whether newly diagnosed or a seasoned FPIES parent, our minds never seem to stop. FPIES is not always predictable; as parents we often question what, where, when and how to do things, from food trials to social situations, and so much more. A support group can help simply by offering a forum to hash it out, with the guidance of a medical professional and the wisdom and experience of other parents who are walking a similar path.
2. The Wisdom of Crowds
Being on this less traveled path of FPIES, resources can seem slim to none at times. Joining a support group helps to gather and broaden our collective knowledge. Many times, we are in search of a good doctor, dietician, food-free activity, or allergy-friendly restaurant in our area. As a parent, we are often overwhelmed and can't look into everything all at once. Talking with other parents in your region can help to gain invaluable, practical knowledge in the face of FPIES.
3. The More You Know
FPIES parents value accurate information from a trusted source. At your local FPIES support group, a medical professional will be in attendance to help answer questions and guide you. In addition, I-FPIES will provide useful updates and materials to help ensure you get the essential information you need. Depending on your group, special guest speakers may be present as well to share their area of expertise. Knowing you are obtaining reliable, up-to-date information can be an empowering experience.
4. Finally, People Who Get Me...
Let's face it: it's difficult for most to relate to life with FPIES unless they've actually lived it. For many who join a support group, it's a profound relief to meet understanding families who have had a similar experience. Connecting with other parents who manage FPIES on a daily basis can be a huge source of support and empathy—it also makes the journey less isolating.
5. Let's Have a Playdate!
Now that we've talked FPIES together, let's meet up for some fun. Support groups can connect entire families. After all, who better to have a play date with than someone who understands? Getting families together outside the support group can help kids and parents socially, physically and emotionally. It can also bring a sense of normalcy and community, along with new lifelong friends.
6. IEP, EIP, 504, CPT, ICD-10. Huh?
What are all these abbreviations? How is my FPIES child going to successfully attend daycare, preschool or elementary school? How do I get insurance to cover my child's formula? Support groups can help with these issues, too. Chances are a fellow parent or the medical professional in attendance will have experience or insights to share. It may also be a great opportunity to get a guest speaker for the next meeting to help on that topic and alleviate some of the stress all these abbreviations can cause.
7. It's All About Proximity
You've joined the online support groups, you've Googled the night away in search of answers. But sometimes we forget there are people in our own communities who are facing a similar challenge. A local support group can get you all together face to face for an open, honest discussion. Connecting on that level can help foster friendships, lead to creativity and inspiration, and even help to raise local FPIES awareness—together.
8. Your Voice Matters
You go to an FPIES support group to get answers. But you'll find that you can also be a valuable resource to other families. Whether you're the parent of a newly diagnosed child or you've been on the frontlines of FPIES for awhile, each participant brings a unique perspective that leads to a collective dialogue. Share what you have learned with the group and others will be grateful for your knowledge and experience!