Tag Archives: Conditions and Diseases

The Hunt for Nessie…and other adventures

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Inverness was the location for yet another flying visit on our whistle-stop tour of Scotland, but was one we all enjoyed hugely and it even saw both children expressing a surprising yearning to move North as they gazed at properties in the estate agents’ windows. Inverness itself was not the primary focus of our visit, but rather nearby Loch Ness, which M insisted was a place we absolutely couldn’t even consider missing out when we were practically passing right by the proverbial doorstep. Our time spent there was tight, but we managed to squeeze in everything we wanted to do and even found an unexpected bonus before we left again to travel on to our next destination.

It was whilst we were in Inverness that the snow that had been dogging our every step finally caught up with us, but it didn’t spoil our morning’s trip to Culloden, the site of the final battle of the Jacobite rising in 1745. Despite M’s reluctant traipse around the visitor centre itself, the rest of us enjoyed the interactive displays which carefully talked the visitor through both sides of the story and depicted the events that led to the final battle. It is not a part of British history that either Mike or the children really knew at all and I enjoyed brushing up on my rather scant knowledge too. Mike and G took their time reading the displays, whilst M and I moved at his usual faster pace as I desperately tried to cut through all the facts to capture his interest in the story itself.

Being the Easter holidays, there were some great children-friendly activities available for younger visitors and they appealed to both M and G, who were fascinated to learn more about the weapons used during the battle as well as glimpsing a small insight into the household essentials of the time. We even participated in the family orientated quiz that was held in the last exhibition space and M proved once again that although he moves fast, he’s able to pick up a surprising amount of information in a short space of time and was able to answer with ease questions that left the rest of our side scratching our heads. Once we had finished exploring all that the museum had to offer on the inside, it was time to wrap up warm and venture out onto the snowy battlefield itself. Despite the grey skies and intermittent snowfall, we managed to make our way all around the site, although the return journey back to the warmth was at speed. Neither child had been particularly interested in visiting Culloden in the first place, so to make a full morning of it counted as a real success in our book!

We enjoyed a picnic lunch in the car as we travelled from Culloden to Loch Ness itself and stopped en route to take a few snaps of the beautiful scenery we were passing. Our destination for the afternoon was the Loch Ness Centre and Exhibition, which talked us through the history of Nessie and all of the scientific (and otherwise) investigations into whether she really exists. The children had the chance to investigate the photographs and evidence themselves and drew their own conclusions about whether the Loch Ness monster really exists. It was a fun and interesting exhibition and I particularly enjoyed the last room, which talked about other incidents and discoveries in the Loch Ness area, rather than focus on Nessie herself. A quick jaunt through the gift shop heralded the end of our day out and we headed back to the hotel for some much-needed sleep before moving on once again for the final destination on our tour of Scotland.

#NEAW2018: E is for Engage

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May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

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May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

#NEAW2018: A is for Awareness

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May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

#NEAW2018: C is for Change

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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.

#NEAW2018: U is for Unite

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May 22: U is for Unite

Over the years, our primary focus for “unite” has been on spending the week, or a part thereof, “Eating like M“. Mike and I are embracing it fully again this year, much to M’s delight, but I have to wonder whether following his restricted diet for 7 days really does enough to show him that we’re standing in unity alongside him. A natural consequence of our choice is that those we work and spend time with during this week will inevitably ask questions, which obviously gives us both a great opportunity to talk about EGID and start to educate the uninitiated, but I keep returning to the question of whether M truly feels a benefit from us standing shoulder to shoulder with him for such a short time.

Of course, the truth is that, for us, every day living with EGID, even though we are not living with the diagnosis and reality of it ourselves, is a day spent supporting M through what has been some of the toughest times he’s had to face in his 12 years. We have lived through and survived the most difficult challenges, but we are still not really living in unison with him. My 30+ years of living with my own chronic illness, Type 1 diabetes, means that I do perhaps have more of an idea of the experiences and angst that he faces each day than others and I know that that truth has brought M some comfort in his darkest moments. I can’t make EGID disappear, or allow him to eat completely normally once again – or, at least, not without some pretty catastrophic reactions that would take their toll and require a huge amount of time to recover from – but I can offer a level of understanding and empathy to him, along with an ever-ready cuddle, kiss and encouraging words from Mum, which may or may not be gratefully received depending on the occasion.

This week, social media, and Facebook in particular, is swamped with the CURED banner for NEAW, which promotes worldwide unity in the EGID community, with all of those living with EGID holding hands and pulling together to seek a cure. It is an image that has resonated with me, especially given the ongoing tumultuous relationship between EGID and the medical profession here in the UK.  Despite M’s objections to the word CURED (which actually stands for the Campaign Urging Research for Eosinophilic Disease) because, as he rightly points out, “…there isn’t a cure yet for EGID and this makes it seem as if there is…“, he too is a fan of the sense of inclusion rather than isolation that is reflected in the words. The realisation that EGID affects others just like him across the world is sinking in and we all find some comfort in the truth that other countries are investing in the area of gastro research, which includes seeking a deeper understanding about EGID and how it works.

Whether its eating like M this week, or sharing the same meals with him at different times throughout the year; supporting M when life isn’t going as smoothly as it could, or cheering him on when he’s talking EGID to those around him; or actively helping both him and G when they’re fundraising for the charities that have worked tirelessly to support them over the years, all of it is standing in unison with M during NEAW and for the rest of the year. Because unity is not just for a day or a week or even a year, but it’s for a lifetime and it’s a commitment I’m willing to make to the EGID community, not just to him.

The question is, are you?

#NEAW2018: D is for Donate

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May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

#NEAW2018: E is for Educate

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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.

#NEAW2018: This is where it begins!

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Over the last few years since we received M’s diagnosis of an Eosinophilic Gastro-Intestinal Disorder (EGID), I’ve approached National Eosinophil Awareness Week (NEAW) in a myriad of different ways. As NEAW 2018 has been approaching, I’ve been racking my brain trying to decide on the best way to talk about EGID for another year. I started posting my daily insights via my social media channels at the beginning of May, trying to highlight each day a different aspect of life with EGID along with a photo or image that captures the sentiment as best I can; we will almost inevitably spend the week “eating like M” again, though Mike might find that more of a challenge than me as he will be away on business for at least a small part of this week; and I will be attempting to post daily blogs during the week itself, sharing just a little of what our journey with EGID is really like.

In the past I’ve tried to come up with different ways to present my week’s worth of daily blogs, but with having just changed jobs and a busy few months at home, this year I decided to fall back on the format I chose 3 years ago and follow the NEAW theme itself, using the word E-D-U-C-A-T-E as illustrated above to inspire my posts each day.

And, as always, all that I ask is that you bear with me for the week ahead and read as many of the posts as you can. If you can also share them on to help spread the word about EGID, then you’ll be supporting families like ours and those of so many we know to raise awareness as much as we possibly can. The message is get out is that we’re working together, across the world, to make a difference and hopefully working towards finding a cure.

Eating Out with Allergies in Glasgow

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Whilst I wouldn’t recommend spending an hour or so wandering the streets of Glasgow looking for somewhere to buy the right kind of cereal with a stroppy 12 year-old and his big sister in tow, I have to be grateful that we stumbled a great little cafe which provided us with the allergy-friendly packed lunch we hadn’t actually realised we were looking for.

iCafe, Sauchiehall Street – As we trudged our way down the street, Mike spotted this unassuming cafe and suggested we stopped to take a look at the menu before we went on too much further. Our eagle-eyes spotted both the gluten-free bread option to accompany the soup and the vegan offerings, so it didn’t seem like too big a leap to hope that they might be willing to make us some gluten- and dairy-free sandwiches to take with us for our lunch later that day. We made a quick decision to allow M to have a “treat” and agreed that he could have a chicken and bacon gluten-free sandwich (no spread) as his lunch choice. He has long been hankering for some bread and we all agreed that this was a fantastic opportunity for him to do so. I was also impressed by the selection of allergy-friendly snacks they had on display and G was also thrilled to have a soya-milk hot chocolate to take away with her and enjoy as we headed towards the bus stop. These toasted sandwiches went down a storm whilst we were at the Riverside museum and I was delighted by this unexpected find.

Hard Rock Cafe Glasgow – This isn’t the first time we’ve successfully eaten at a Hard Rock Cafe, having tested the allergy-friendly mettle of those in both Lisbon and Athens over the last couple of years. I think that now is an opportune moment to confess that I am something of a die-hard Hard Rock fan and love nothing more than visiting the Hard Rock Cafes of the world, picking up a City Tee in each location to add to my collection. G and M have become mini fans too and every time we travel anywhere, once of M’s first questions is whether there’s a HRC for us to go to whilst we’re there. It was therefore inevitable that our dinner would be at the Glaswegian Hard Rock Cafe and G decided to try something a little bit different by ordering the GF pulled pork sandwich with chips for her main course. M agreed to compromise on what he really wanted and played it safer as he had already had the GF bread earlier in the day, finally opting for a plain GF burger accompanied by a chicken breast, bacon and cucumber sticks.

Despite the initial run-in we had with our waitress, who wasn’t prepared to accept my first answer that it was easier to tell her what M could eat, rather than list his allergies in full, we eventually convinced her to work with us and with the restaurant manager to place our order. Once they had grasped what we were trying to explain when it came to feeding M, things turned round quite quickly and I absolutely cannot criticise the care that was taken with the children’s meals for the rest of our dinner. Once again we enjoyed a superb meal at yet another restaurant from my all-time favourite chain and wouldn’t hesitate to recommend a visit there to anyone with allergies.