Tag Archives: NEAW

NEAW 2015 – E is for Educate

It’s difficult to believe that National Eosinophil Awareness Week (NEAW) is once again with us and we have been, believe it or not, even busier this year than last in spreading our message about life with EGID. I’m hoping to again post a blog a day to raise awareness and this year have decided to follow the theme of NEAW, which uses the word E-D-U-C-A-T-E to do it:

Today’s letter is E for Educate.

This year we have been focussing our energies on educating those around us and around M about EGID.

How? Well. in the last week I’ve been interviewed on our local BBC radio station, featured on the front page of our local newspaper and last night we had a display and raffle at a local choral concert. During the week ahead, M will be sharing his story at school via a PowerPoint presentation that he and G worked together to produce and later in the week, I’ll be sharing that video with you all.

Why? Because awareness is key. The more people who know about EGID and trust me, the number of medical professionals who have even a passing knowledge of this chronic illness is staggeringly low, let alone the general public, the greater awareness of it there will be, which in turn means better support for children and adults like M and families like ours. Not only is there little understanding, but there is also an astonishing lack of funding for research into gastrointestinal disorders in the UK. Without medical research, then it is highly unlikely that approaches to treatments will improve and nor, by default, will the quality of life for these individuals.

What can you do? Re-read my explanation of EGID and then spread the word by talking to someone about EGID and explaining what it is. You can share these blog posts this week and ask friends and family to share them on too. Keep an eye on my FB page and Twitter feed to see who else is sharing information for NEAW 2015. Find out more about those charities supporting families living with EGID: FABED in the UK, Apfed in the USA and AusEE in Australia. Change your FB or Twitter profile picture to one of those promoted by FABED or Apfed even for just one day. Be more aware and know that by knowing something about EGID, you are helping support M and others like him.

“So much time…

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...and so little to do. Wait a minute. Strike that. Reverse it…”

– Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post. However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having:

And now, the end is here…

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Today marks the end of an important week for our family. It’s been an interesting week of sharing more about life with EGID with friends and colleagues as well as reminding ourselves of just how tough it can be to follow M’s restricted diet. I’m not usually a snacker, but this week, perhaps because it hasn’t been easy to just go to the cupboard and grab a handful of whatever I’ve fancied, I’ve wanted to snack at the drop of the hat. Even with our cupboards and fridge full of M-friendly foods, the options for breakfasts, lunches and snacks are incredibly limited and I’ve found myself returning to the same things, time and time again because there really is no choice.

This week, a fellow EGID and FABED Mum put together this amazing video to mark National Eosinophil Awareness Week, which includes some of the brave children we’ve had the privilege of getting to know during our journey to get a diagnosis for M. Some of you may already have seen it – the statistics suggest it has already been viewed over 9,000 time through the social media – but take a look again: these are the faces of children and families who battle EGID on a daily basis. These are children like M and families like ours:

http://www.youtube.com/watch?v=avLT99NWX64

One day left to go in our mission to “eat like M” for the week and perhaps the hardest food challenge of all…a BBQ social at a friend’s house!

	M	Me	Mike
Breakfast	Bowl of free-from rice pops Maple syrup Rice milk Toast (1/2) Peanut butter	Rice flour toast (2 slices) Peanut butter	Rice flour toast (2 slices) Rice milk
Lunch	Bruschetta made with: 4 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Apple (1/2) Pear (1/2)	Bruschetta made with: 2 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Pear (1/2)	Bruschetta made with: 2 slices rice flour toast Tuna, corn, cucumber & egg free mayonnaise Mackarel Apple (1/2) Pear (1/2)
Dinner	Baked sweet potato M&S Venison sausages (2.5) Olives Pistachio nuts Carrot cake cupcake	Sainsburys Free-from sausages (1.5) Sweet potato Salad – lettuce, cucumber, tomato, avocado	Baked sweet potato M&S Venison sausages (3.5) Green salad Banana Nectarine
Snacks	Nakd cocoa orange date bar Fruit buttons (lemon)

Quiet day

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After the excitement of an early start to our awareness week at the end of last week and the unexpected challenge of a sickness bug for poor M on Friday night, we had something of a quieter day today. Mike and I both have some dietary challenges to face in the week ahead and Mike’s started today with a business trip, which needed some very careful and canny purchasing of lunch whilst he was out on the road. He was reasonably successful, though he found the choices extremely limited, especially given the further restrictions to M’s diet over the last year and the prices higher for the few items he could choose to eat.

Courtesy of http://www.kidsaware.co.uk

One of the things we’ve been encouraging M to do since his diagnosis, is to develop the confidence and skill to explain a little about his condition and share information about his food allergies with new acquaintances. During this past week, I have been proud to discover that he has been doing this and doing a pretty good job of it, all things considered. He has been able to give an explanation that has partly explained his food allergies and, in both cases, the Mums he’s been chatting to have been comfortable enough to approach me and ask more questions about EGID. There is an alarming lack of knowledge and information concerning EGID, but this wonderful information flyer, produced by FABED, gives an easy-to-understand explanation of what is a complex condition:

And, just to finish today’s blog post, here’s our meals for the day. As you can see, M is struggling with a poor appetite because of the bug, so getting anything into him is a win right now, however small it is:

	M	Me	Mike
Breakfast	Banana (1/4)	Sliced pear	Bowl of: Free-from cornflakes Rice milk
Lunch	Nakd Berry Delight date bar	Sakata rice crackers (6) Cucumber Celery Peanut butter Orange	“Chicken on a stick” Eat Natural Brazil & Sultana bar (2) Apple Banana
Dinner	Orgran Mini Outback chocolate animals Smoothie (1/2 banana, 4 strawberries, 100mls rice milk)	Rice Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)	Rice Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)
Snacks	Fruit buttons (apple)		Blueberry smoothie

An early start to Awareness week

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National Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon. Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story. To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies. I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

The cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community. I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there. This time last year, I wrote about our decision to “eat like M” during the week: one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too. Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them. We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

	M	Me	Mike
Breakfast	Fruit buttons (apple)	Sliced pear	Bowl of: Free-from cornflakes Free=from rice pops Rice milk
Lunch	Roast chicken Sweet potato wedges Corn Peas Carrots Roast parsnips Really not dairy mayonnaise	Roast chicken Sweet potato wedges Corn Peas Carrots Really not dairy garlic mayonnaise	Roast chicken Sweet potato wedges Corn Peas Carrots Roast parsnips Really not dairy garlic mayonnaise
Dinner	Rice bread toast (2) Peanut butter Orgran tinned spaghetti Apple (1/2) Cucumber	Corn tortilla chips Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn) Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)	Corn tortilla chips Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn) Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)
Snacks	Nkd Rhubarb & Custard date bar Fruit string Chocolate cupcake Pear (1/4) Dried apricots		Dried apricots

7 years to diagnosis

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