With the growth of the internet and the increasing popularity of social media platforms as well as the plethora of blogs out there that cover a multitude of topics, the world has become a lot smaller and it’s easier to spread the word and work towards greater understanding. Our family has become adept at educating those around us about EGID, a necessity when even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture. As a quick aside, try living with anyone who is in the midst of an EGID flare and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness. The same is true when it comes to feeding tubes as sadly misconceptions are rife and the reasons behind a tube can be as complex and individual as there are stars in the sky. Even with children or adults living with the exact same condition, their symptoms and need for additional nutrition can be vastly different.
Of course, those of us who live with the reality of additional nutritional support and tube-feeding often have the best opportunity to educate those around us about it, but we can’t do it on our own. PINNT (Patients on Intravenous & Nasogastric Nutrition Therapy) here in the UK and the Feeding Tube Awareness Foundation in the USA do an amazing job of supporting families going through nutrition therapy, be that newcomers to the world of tube-feeding or those who’ve been doing it for years. They also provide tools and advice that can be effectively used to educate the outside world about the reasons behind this treatment and how to give easy-to-understand answers to the most difficult of questions.
Last year, M made a video for National Eosinophilic Awareness Week, which he used to help teach his classmates and the wider school not just about EGID, but also about his tube and, to be perfectly honest, I couldn’t think of a better way to help educate my community than sharing it once again: