Hi! I'm Doctor Evka
Who Am I?
I share this because I am one of you, and we can do this together.
Dear FPIES Community,
Who am I? I am a board certified family physician with years of experience and advanced masters level training in both epidemiology and biostatistics. (Yes, family physicians see children, too!) More importantly, I am one of you - a parent of a child with FPIES!
By the time that you finish reading our book, you should be at least somewhat acquainted with me. I hope! It uses my writing style. Within the book, I give you personal tidbits because you deserve them. Yes, you! FPIES is something bigger than either of us, and neither of us needs to conquer it alone.
Do you want to know a little more about how the book was written? Due to a crazy set of circumstances, I read 400+ journal articles and wrote the entire 270+ page book in a little over a month. Yep, about 30 days! 270+ pages! On a subject that I did not yet know that I could write THIS much about! What?
The words just flowed, and it wasn't of my own doing. No way! I was too busy taking care of my daughter during the day! The words and the research were mostly done at night while everyone was sleeping. How? My coauthor - Joy Vines (DefendingJoy.com) - was amazing; she got many of us together and proofread like nothing else mattered. Heather Martin - a registered dietitian who sees children with FPIES - helped answer nutrition questions. Plus, the workgroup who created the "International consensus guidelines for the diagnosis and management of food protein–induced enterocolitis syndrome" provided so much clarity; I loved reading their various research articles. Then there were you - other parents of children with FPIES! You know who you are even if many of you have wanted to stay anonymous! We all shared a common goal - to create something that would provide hope to those new to FPIES.
Knowledge about a rare medical disorder leads to a feeling of control. In the face of fear and helplessness, under circumstances where many primary care providers have never heard of FPIES and specialist visits can be months away, people need hope! They need to replace fear and helpless with action plans, knowledge, and that feeling of, "I got this... at least a little!"
I truly hope that the book speaks to you and that you find it to be a useful resource. I hope that my physician colleagues will see its merits (and if they don't that they'll provide constructive feedback). Just as importantly, I hope that you find some inspiration for turning FPIES into something more positive. I love the famous quote, "Never doubt that a group of children with rare disorders and their loving parents or caregivers can change things for the better." With this book, I hope that you have proof that we certainly can!
Head over to other sections of www.evacesnek.com for book updates and other information. If you want to spread knowledge about FPIES to others, share our book: The FPIES Handbook: Information for Parents and Caregivers. Advocate for FPIES! Spread awareness! Go on the websites of FPIES organizations! Speak to your medical teams! Most importantly, don't doubt yourself! You can do this! You can take the difficulties of FPIES and figure out how, in spite of them, you can be braver and stronger! For extra credit, perhaps you can turn those difficulties into something that will make the FPIES world a little bit of a better place!
One more thing, in case you ask, no, this book is not some kind of an attempt for me to develop a patient following. I am currently NOT seeing patients in any of the offices where you may find me online, and I am currently NOT planning to be anyone's allergist. I am in the trenches with many of you. Living FPIES every day! Breathing it! None of us is alone.
Dr. Eva Cesnek