Tag Archives: EGID

#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.

A Brewing Storm

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Yesterday a social media storm hit the EGID world, especially for those of us who are, or who have been, under the care of Great Ormond Street Hospital over the last few years. The reason? A story published by The Guardian newspaper on Saturday night, which has raised questions about the treatment of patients of GOSH’s gastro department following a huge number of complaints from parents and successive reviews of care carried out by the RCPCH (Royal College of Paediatrics and Child Health) since 2015.

As a parent to a child with an EGID diagnosis and one that was given by GOSH at that, this story is heart-breaking and yet one that I know needs to be told. Whilst M has never been subject to the “aggressive treatment” described in the reports published by The Bureau of Investigative Journalism (see here and here), we have struggled with our own issues rising from some of our experiences during inpatient admissions at GOSH and I have always been open and honest in sharing these via my blog. We have made complaints, challenged M’s consultants and spent time talking to the Chief Exec to try and make sense of it all and improve the way that, not just M, but other children have been treated whilst they’re there.

Last summer I shared my fears about the huge question marks that have been hovering over the EGID diagnosis for a while and how they could impact on the treatment and care that M receives from the medics in our lives. This week my fears grow even greater as the TBIJ documentary investigating these allegations about GOSH will be aired on ITV1 at 10.40pm this Wednesday, April 18th. Whilst I know that the documentary is seeking to reveal the truth behind some of the treatment decisions made for certain families, there will undoubtedly be concerns raised about the veracity of the diagnosis of EGID itself and with that comes inevitable questions about whether any of those diagnosed with EGID are genuinely living with it, or not. Comfortable viewing it may not be, but I will be watching it – and probably keeping my eye on the resulting social media frenzy too.

At the end of the day, I’m not really that bothered about what the label itself actually is for M – EGID, MCAS, food allergies or something else – as all I want is a better life for him and the others who find themselves in the same boat. As I said last year,

“For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.”

*You can read a more in-depth, first-hand commentary about this GOSH story here

And I’m back!

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You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.

But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.

It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.

Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.

Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!

Show Your Rare

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The last day of February every year is recognised as Rare Disease Day. It’s a day to raise awareness of rare diseases and acknowledge the impact they can have on those living with them and their families. This year marks a decade since the first Rare Disease Day was launched and will see thousands of people from across the world come together to advocate for greater patient involvement when it comes to research into rare diseases.

Rare Disease Day was launched on February 29 2008 as “A rare day for very special people,” and has grown from being recognised in just 18 countries to now hosting events in over 100 countries worldwide. EURODIS, the European Organisation for Rare Diseases, organises the international campaign, whilst National alliances and other patient organisations host events locally. There are over 6,000 rare diseases known to be in existence and 80% of these have been identified as having genetic origins. Astonishingly, approximately 5 new rare diseases are described in medical literature every week.

Rare diseases can affect everyone, they’re not fussy about who they pick on. Over 3.5million people in the UK are affected by a rare disease, which equates to 1 in every 17 UK nationals. Somewhere between 50% and 75% of rare diseases will affect children and scarily, 30% of rare disease patients will die before they reach their 5th birthday. The symptoms of a rare disease are frequently multiple and varied and not only are they not exclusive to that illness, but neither are they all experienced by all patients, which makes diagnosis a long and drawn out process. All too often the diseases are misdiagnosed and beneficial treatment can be unavoidably delayed. A lack of scientific knowledge and consensus throughout the medical community can add to the complexity of reaching a diagnosis and adds significantly to the burdens placed on the patient and their family.

Imagine being told that your child has a chronic illness that neither you, nor most of the medical professionals you’ll end up meeting from that point on, can pronounce – or have even heard of until that moment. Imagine finding out that that illness is rare: that around 1 in 10,000 people are diagnosed with the most common form, but that your child has one of the rarest forms and that there is little research into it. Imagine learning that even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture – and having to live with the reality of this rare disease and its effects on your family’s life on a daily basis.

And then imagine finding out, less than 5 years after the time when that initial diagnosis was finally made, that another rare disease has landed on your table and you need to find out as much as you can about it to make sure your growing child is receiving the very best care possible. That happened to us about 6 months ago, when we started to explore whether M could also be living with Mast Cell Activation Syndrome, or MCAS. It seems highly likely that he is as this is a condition that closely resembles EGID with its symptoms and is a problem with another type of blood cell: the mast cell. Treatment-wise, there is nothing more we can do than we are already doing in terms of his medication and dietary restrictions and so in many ways this is just another label to pop in our pocket and pull out from time to time. All we can do is stay positive, keep encouraging him to live life to its fullest and enjoy every moment we can.

 

Greece Photo Round-up 2017

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Making the most of our 10 days in Greece was everything we needed it to be this summer. It’s been a big year: with me changing job, G becoming a teenager, M taking SATs and the move to having 2 children at secondary school; and we all appreciated the chance to escape from the day-to-day and spend some precious family time together relaxing and enjoying each other’s company. From the ancient monuments in Athens to the beauty of Syros, Greece was an amazing holiday destination and one place we would love to return to again.

Unexpected Greek Treats

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We might have packed a suitcase full of a variety of allergy-friendly foods to keep us going during our 10 days in Greece, but, as ever, we kept our eyes open for any M- and G-friendly Greek treats that we could spot in the supermarkets. delicatessens and local shops in Athens and on Syros. I had no doubts that we could find the bare essentials of soya milk, goats’ cheese and rice, but it’s those unexpected finds that make all the difference when we’re travelling as a family.

The first fantastic find, and one that we found ourselves stocking up with to last the duration of our stay, was this unassuming pack of smoked chicken fillet that quickly became a firm favourite with M. Mike had ventured out of our Athens studio one afternoon and found a delightful small deli less than 5 minutes walk away. They had a huge selection of fresh and dried olives, oils, cheeses, breads and cooked meat, but it was the smoked chicken that caught his eye as we had been struggling to find an appetising way to cook and serve chicken for M, who is not the biggest fan of cold chicken at the best of times. The smokey flavour was something new to him and whilst he was prepared to let the rest of the family have a small taste to see just how delicious it was, he insisted that the remaining slices were his and his alone. Mike also discovered these brown rice cakes with pink Himalayan salt, a surefire hit with M and the perfect base for his smoked chicken fillet sandwiches that became a lunchtime staple.

As we had expected, we had no problem in sourcing goats milk, butter and cheese for G in Athens and were also delighted to find both almond and hazelnut milk there too. She quickly fell in love with the traditional Greek Feta cheese and ate it as frequently as M devoured the chicken fillet for lunch. We also found a small selection of gluten-free crisps that they both enjoyed on occasion as just a small snack when needed. However, it was on Syros that we were truly amazed by the unexpected plethora of allergy-friendly foods we found in the very small supermarket in the seaside village of Finikas. When we ventured inside on our first day on the island, we were hoping that we might be lucky to find some soya milk for G to drink and were completely blown away by this astonishing selection of dairy-free alternatives, from almond milk to chocolate soya milk, goats cheese, butter and yoghurt, and the one item we had never expected to find there: rice milk.

This tiny treasure trove also stocked a small, but comprehensive selection of gluten-free products including rice cakes for M, gluten-free pasta, bread and biscuits. We bought a couple of different flavours of the allergy-friendly biscuits that quickly became a favourite with G. These were a welcome treat and alternative to dessert for her especially when accompanied by some small slivers of Feta, whilst M enjoyed the opportunity to pick and devour fresh figs from the trees surrounding our villa at the Good Life. Having discovered these unexpected Greek treats, we made an effort to buy a few extra packs of biscuits and rice-cakes alike to bring back home with us to keep the memory of our Greek adventures alive for just a little longer.