Tag Archives: Educate

#NEAW2018: E is for Educate

May 20: E is for Educate

When M was finally diagnosed with EGID 5 years ago, it came at the end of a long, relentless and frustrating battle with the medical profession to have our concerns heard and acknowledged; and not simply be dismissed as over-protective parents; or worse. By the time the diagnosis was actually formalised, I had done a lot of my own reading around the subject and already knew as much about the condition as was readily available online. In the 5 years since that hospital appointment, we have found ourselves continually having to educate those around us, including the medics, who know little to nothing about what is becoming an increasingly controversial diagnosis, especially when it affects the lower GI tract as M’s does.

EoE, or Eosinophilic Oesophagitis, is becoming more widely recognised and the diagnostic criteria for this condition are well established, not least thanks to the continued research of Dr Marc Rothenberg and his team at Cincinnati Children’s Hospital. When it comes to the rest of the GI tract however, there opinion is very much divided. There are no clear guidelines as to how any of the other Eosinophilic disorders should be identified and diagnosed; and as the recent documentary about GOSH revealed, there is definitely no consensus on how they are best treated. One of the biggest problems facing children like M is the minimal investment into the research of gastrointestinal disorders and the fact that there is absolutely none into paediatric gastro research. With the credibility of EGID as a “real” chronic illness under debate, consultants all too often veer away from it as a possibility and either move towards a more psychological diagnosis or simply shrug their shoulders and leave these individuals to cope on their own, with little or no regular input.

Whether you want to lay the blame of M’s health issues at the feet of eosinophils, or mast cells, or indeed any other type of white blood cell that could be causing his body to attack itself and react to more foods that you can even begin to imagine, I don’t really mind. I’m not one to hang my hat on labels particularly, especially when that label has no meaning for the greater proportion of the people that M comes into contact with on a day-to-day basis; but I also know that being able to put a name to a problem lends a sense of genuineness to his symptoms as well. As a family we’re not able to walk away from the reality of living with this condition day in and day out because every week we experience the effect of it. I’ve said it before, I’ll say it now and I will no doubt say it many times in the future:

The symptoms that M suffers are very real and can be hugely distressing at times.

M is absolutely your average 12 year-old. He has attitude, he knows it all and he could argue that black is white with the best of them. He loves computer games, fantasy stories and endlessly watching Star Wars or Marvel films. He runs around and is noisy and can drive even a saint up the wall at times. He doesn’t look ill and I’d defy anyone who doesn’t know him to pick him out as the “sick kid” in the line-up. But that’s the face he presents to the outside world and reflects the attitude to his health that Mike and I have worked hard to engender within him.

What you don’t see is the worn out child who can’t move from his bed at times because of the pain and lethargy that accompany a flare-up. You don’t hear the quiet heart-to-hearts late at night, when he’s struggling with yet another reaction and doesn’t understand why it’s happening to him again. You don’t feel the despair that hits hard after another food causes soul-destroying disappointment because it’s clear that he just won’t be able to eat it without problem. And you can’t imagine the heartbreak of seeing the quiet acceptance that he won’t be able to go to a friend’s sleepover or away on school camp because of the possibility of suffering an embarrassing symptom that none of his friends really understand.

That is the truth of life with EGID and that’s the reason we will always endeavour to educate those who come into contact with M as well as the rest of the world in whatever way we can.

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NEAW 2015 – The Round-up

Last week was a busy week.  We just about managed to pause for breath along the way and achieved far more than we thought was possible.  Having taken a couple of days off from my blog – well I thought you’d probably had more than enough of me last week – I wanted to revisit NEAW 2015 to give a round-up of all our activities:

11030831_828235363934315_6504625663623229869_oE for Educate – I appeared on local radio, there was an article in our local newspaper about NEAW and even a follow-up article this week to talk about what we did. I blogged daily and posted regular updates about our life with EGID, achieving 600 views of my blog during the week as well as numerous shares on both FB and Twitter.

D for Donate – With the help and generosity of friends, family and fellow music lovers, we raised a fantastic £260 for FABED.  Thank you so much, I know that money is going to a great cause and will make a difference to EGID families who need their support just as much as we do.

U for Unite – WE DID IT!  Mike and I survived a week “eating like M” and discovered just how difficult a challenge it is.  I was filled, yet again, with absolute awe and admiration for M’s ability to eat meal after meal after meal consisting of nothing more than chicken, rice and cucumber.  I’m also incredibly proud to be able to share with you that G also did her bit on the Friday and ate “mostly like M“, with just a little bit extra of goats cheese and fruit to keep her smiling during lunchtime at school.  It’s the first year she’s asked to join in our challenge and I’m so impressed that she managed to stick it out without a wobble.

1529734_826685834089268_6472897324569407860_oC for Change – I hope we managed to change people’s attitude to and understanding of EGID during the week.  It was great to see the hashtag #morethanfoodallergies trending across FB and Twitter because that’s the key point I wanted to communicate last week: that whilst M struggles with food, his allergies are only a very small part of a much bigger picture.

A for Awareness – We raised awareness in everything we did.  Pink ribbons adorned our clothes, pump backpacks and hair, FABED awareness bands could be spotted around our wrists and M shared his video with the world.  It has had nearly 400 hits on YouTube, which made M’s week and something that started as a small project to encourage him to communicate his feelings about his illness morphed into a fantastic tool that allowed him to actively take part in raising awareness this week.

11265424_10152776813631123_3399504883350731420_nT for Thanks – I said my thanks and expected nothing more, but received some lovely compliments back from those of you reading and sharing my blog.  I’m just a Mum trying to do the best I can for my children and not always getting it right, but it was very nice to be told that I am “…the supermummiest mummy of the lot…” especially by someone who’s not even a family member and therefore under no obligation to believe that to actually be the case!

E for Engage – It may have been the hardest blog post to write for me, but M and G proved that they could engage with their school-mates in the most impressive of ways.  M presented his video at school throughout the week and had a fantastic response.  At the end of the week, I received this lovely and completely unexpected e-mail from G’s teacher to tell me about her class’s response to what M had to say:

M came to visit us with his presentation earlier on in the week and I was amazed, not only by the presentation, but also by his maturity and bravery.  He was just amazing and a real inspiration to us all.  G was also fantastic – helping answer some of the children’s questions and supporting M in the process.  They are both absolutely amazing – a big well done to them and your whole family.

And that just about sums up NEAW 2015 for us, so it must be time to put our feet up for another year…well, a Mum can dream, can’t she?!feetup