Tag Archives: changing attitudes

#NEAW2018: C is for Change

May 23: C is for Change

The dictionary defines change as “to make or become different” or “an act or process through which something becomes different“, but what does that really mean in the context of raising awareness about a rare disease?

There are so many things that need changing when it comes to EGID, some of which we can actively work towards achieving and others which can be nothing more than a pipedream at the moment. Educating others about what EGID is and how it affects those diagnosed with it will hopefully bring about a change in attitude in both the community surrounding M and the wider medical profession. Even though this often feels like an uphill battle, it is an achievable target and something we should all keep working towards, chipping away slowly at the seemingly indestructible walls that surround EGID as a valid diagnosis. Those changes in attitude will help M feel less isolated by his health problems and more confident in being the unique individual he is despite his EGID and not because of it.

The 12-year road we’ve travelled since M was born has seen many changes and there is no question that there will be many more to be traversed as he grows towards adulthood. He’s gone from an active, can-eat-everything toddler, through a stage of being a tube-fed child taking 13 medicines multiple times a day to now being a tween eating 9 foods on a regular basis, taking 4 medicines plus a multi-vitamin each day and thriving. The next few years of teenagedom will undoubtedly bring a myriad of changes to be navigated, mostly thanks to those pesky hormones, and which will hit us in ways we can’t even begin to imagine. Who knows how treatments and medical breakthroughs will change as he gets older and the best change we can hope for is that his doctors will find a way to improve his quality of life beyond our wildest expectations.

What are the changes that M would most love to see happen?

  • To be eating as “normally” as possible. What he wants when he wants and with no repercussions at all
  • To be able to go without all of his medicines, especially the E028 drink, and not worry that a reaction could be just around the corner
  • And to not feel different, or alone, or set apart from his friends because of a condition that he can’t predict or control, but can just manage as best he can

What I want is not really a change at all. I want him and G to remember that they are able to live life to its fullest, loving and embracing every moment of it and grasping every opportunity that comes their way and making the most of them all.

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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

Changing Attitudes – NEAW 2015

Last week I took part in the Diabetes blog week and looked at my changing attitude to my T1D over the past 3 decades as well as changes I hope will happen in the future.  social-media-treeMy plea for improved education about T1D vs. T2D is closely linked to my longing for increased awareness about EGID and has resulted in my efforts to bring the focus of family, friends and our local community to the subject through local media coverage and social media this week.

During a music break in my recent radio interview, the presenter asked me an interesting question: whether I’m upset when people misunderstand EGID?  We had been discussing off-air the fact that there is often recognition of the food allergies side of the illness, rather than the disease itself and whilst I understand that allergies are something easy for people to understand, I’m frustrated that that’s what gets people interested in finding out more.  I pondered his question for a while and once the session was over was able to give him my honest answer: No.  I’m not upset that people misunderstand EGID because I’m usually impressed that they know something about it. The truth is that they must have heard of EGID in the first place to be capable of misunderstanding this complex disease and therein lies the problem.  Ignorance of EGID and the unseen effects it has on individual and family alike means that those of us living with it are sadly often viewed as making it all up or wildly exaggerating the severity. That attitude can leave a family feeling very alone at a time when emotional and practical support is needed most.

 This is what today’s C is all about – Changing Attitudes.


The truth about EGID is this:  It’s not just about the food allergies, that’s the easy bit to understand and, in many ways, the easiest bit to live with.  It’s about much, much more than that.  It’s about the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way.  The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway.  legoThe fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to.  The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst and you’re familiar with just about every pain chart created in the history of man.

It’s about getting used to these things as being normal, or not even realising they’re not. 

And it affects the whole family, not just the one with the diagnosis.  The endless merry-go-round of numerous hospital appointments, medicines to be taken and food to be cooked safely, avoiding cross-contamination at all costs is exhausting.  The keeping of meticulous daily records of food eaten and symptoms experienced to try to find a link and make sense of what’s going on, and dealing with the self-recrimination when you miss a day out because what if that was the one that would give you more answers? Pictures July 06 030Day trips, meals out, holidays all require military precision to organise and every decision is coloured by whether needs can be met or not. The feelings of isolation, for parent and sibling alike, because it’s frequently the case that there is no-one else nearby who has the same experiences or can truly understand. The lack of any conversation that doesn’t revolve around toileting and being too worn out to come up with an alternative subject.  The sense that I, as the parent, know more about the intricacies of my son’s chronic illness than any medical professional we meet along the way and the frightening realisation that my children know infinitely more than them too.

It’s about the heartbreak of holding my sobbing child at 3am, tears streaming down my own cheeks as I struggle to find the words to bring the comfort that nothing else can bring at that moment in time.

At our recent admission at GOSH, one of the gastro consultants told me that it is widely recognised that children with gastro conditions have the worst quality of life of any child living with a chronic illness.  EGID is an invisible illness, one where the individual frequently learns to hide, disguise and survive their struggles and just carries on regardless, accepting this life as their norm.  Families supporting a loved one with EGID often feel isolated – not just from their circle of friends, but from the medical community, who know little about it and may question the integrity of the very people who are fighting to get the best care they possibly can.  It’s not a parental fad about food allergies or an over-anxious Mum fussing about the small things; and it’s definitely not a figment of anyone’s imagination.  The effects of EGID can be cruel to experience and devastating to see.  So a change in attitudes is not only important, but a necessity for all those living with this diagnosis.

Now you know a little more about EGID and just how it impacts, take some time to think about how you can support those you know living with this disease.  Don’t think that there’s nothing you can do to help.  An offer of a cup of tea once the school-run is over, a home-cooked meal for the parent not in hospital or checking to see if there’s anything they need from the shops is more than enough.  No gesture is too small: a smile, a text message or even a FB like or comment on Twitter will let that family know that they’re in your thoughts and that there is hope for change in the future.