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There are about 7,000 rare diseases which are recognized on February 28 for Rare Disease Day. Food Protein-Induced Enterocolitis Syndrome (FPIES) is the rare disease that affects our family. It primarily affects children young children, and is a poorly understood food allergy condition. It’s a non-IgE, cell mediated allergy that causes two categories of symptoms: acute and chronic. Acute reactions cause vomiting several hours after ingestion, which 20% of the time results in shock. In our case even a trace amount of cross contamination from causes vomit and shock starting exactly 4 hours after eating it. Fortunately Zofran is effective at preventing the shock, but without it the reaction can be life threatening. Chronic reactions are delayed by hours to days and cause a variety of symptoms which can vary from one individual to the next, and the definition is still debated. But we have seen the following in our daughter: abdominal pain, diarrhea, bleeding rash on the bottom, malabsorption, weight loss, developmental regression, hypoglycemia, and acidosis. These symptoms can be mild, or severe enough to require hospitalization for IV nutrition. It can be very challenging for children and their families to deal with. The lack of research and awareness about FPIES makes it even more difficult. Parents frequently seek help from multiple doctors and wait months or years before receiving the correct diagnosis for their child. Even after the correct diagnosis is given there are few resources available to help families navigate the struggles of FPIES. For a better understanding of how pervasive the effects of FPIES are, check out this explanation of what allergy friendly cooking is like or this description of the limited diet some moms have to put themselves on to make safe milk for their child.
To help support FPIES families on their difficult journey, Quinoa Queen is selling awareness bracelets. In honor of rare disease day they are donating $1 from each bracelet sold to the FPIES Foundation. This donation will help improve the lack of knowledge about FPIES. They are wonderful company that cares about their customers, and I have witnesses their great customer service. I am very thankful that quinoa queen has decided to donate to the FPIES Foundation. Quinoa Queen cereal is a favorite for many FPIES families because it just has a single, high quality ingredient, and careful consideration they provide for allergy needs. They even changed how they clean the manufacturing equipment just to make it allergy friendly. You can check out their product offerings on Amazon.
To help with the lack of resources for parents I am working on a book called FPIES 101 if you are interested in being notified when the book is available you can follow Defending Joy’s page on Facebook or sign up to get notifications of new post on Defending Joy’s blog.
Don’t forget to get your FPIES Awareness bracelets.