With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”
National Eosinophil Awareness Week 2016,
A time to share personal experiences,
Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)
Inviting those who have never heard of EGIDs to find out more,
One way to help raise awareness,
Not for self but for others as we are,
All in this together, the EGID community, so,
Let me tell you a little bit about what it’s like to be the mum of a child with EGID.
Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,
Often this will mean that there will be pain and possibly inflammation,
Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,
Ige or non-IgE mediated food allergies may also be present, but not always!
Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,
Often the only option for many is a feeding tube as the body struggles with food proteins,
Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,
Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,
Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,
Life can be difficult for those diagnosed with EGIDs.
Awareness aids understanding of EGIDs,
Watching what you eat, if you are able to eat, is central to managing symptoms,
Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,
Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,
Education is also key to raising awareness and understanding of the impact of EGIDs,
Networks are central to enabling those with EGIDs to feel supported by those who understand
Eating … when food is the issue, is an issue …,
Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,
Societal understanding though will help those with EGIDs to engage more with their communities.
We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,
Enabling those with an EGID to share their experiences with others can help this,
Eventually we hope for a cure or better ways to manage the disorders,
Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.