Any time someone has a chronic health condition, they are usually encouraged to join a support group. Such groups have a reputation for encouragement, empowerment, and education, and those things are vital to the survival of a major health concern.
FPIES is no different. Living with FPIES can be confusing, overwhelming, and isolating. A support group can really help alleviate the pain of suffering FPIES alone.
With FPIES, though, it’s very difficult to find a local support group. It can be a challenge for many FPIES families to find a geographically accessible doctor that understands this disease; harder still is discovering someone else in your area to meet up with who knows about or suffers from FPIES.
Meeting with a traditional allergy group can sometimes work, but because FPIES and traditional IgE-mediated allergies operate so differently, such a group will not fully meet the needs of an FPIES family.
Because of this, many FPIES families turn to the internet for support. There are some very active and amazing groups on Facebook and BabyCenter that provide many of the comforts of an in-person support group, but did you know that the FPIES Foundation has a Support Forum that provides the same?
Many people choose not to participate in social media, and for an FPIES family that eschews Facebook and other social media outlets, finding support can be tricky. We would encourage those families especially, and all FPIES families in general, to visit our Support Forum for help, questions, and encouragement.
There are many active participants on the Forum, and FPIES Foundation Volunteers check in frequently to address any questions that need more detailed answers.
There’s no need to walk the FPIES walk alone! Find the help you need at the FPIES Foundation Support Forum.