Tag Archives: CURED

#NEAW2018: U is for Unite

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?

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#NEAW2018: This is where it begins!

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.

Giving fair warning

It might be late on a Sunday evening, but tomorrow sees the start of May and just as in previous years, I’m giving what I consider to be fair warning!

The 3rd week of May is National Eosinophil Awareness Week 2017. For the second year in a row, I will be trying to post a new photo, fact or update on my Facebook page every day for the whole of May, which of course will include my regular daily blogs during the week itself. With M’s SATs and some tight deadlines at work, this will be no mean feat, but one that I will be determined to achieve if at all possible. Some might happen earlier than others, some might simply be repeated from last year, but the important thing is that we’re raising awareness of #EGID.

Please feel free to share and help us reach as many people as possible.

EGID – the real story

I am still reeling from the astounding response to my last blog post, Dear BBC Controller.  When I asked you, my wonderful readers, to share what I had written in a hope of raising some much-needed awareness about EGID, I have to admit to only expecting the odd person to possibly share the link on Facebook with a few of their friends and nothing prepared me for what happened next. From the 20 shares that I know about, that post gathered momentum and I experienced a fantastic demonstration of exactly what social media can do.  Within 48 hours of publication, that blog was viewed by over an amazing 1,800 people across 33 countries and the statistics are still creeping up on a daily basis.  I have been humbled by this response to my plea and I can do nothing more than extend my heartfelt thanks to you all.

One of the things I realised, however, is that I have never given a comprehensive explanation of EGID and that my last blog post may have left new readers wondering what on earth all the fuss was about. Those of you who follow my blog will have an understanding of how this chronic illness impacts our lives and for those who know our family personally, you have probably had a brief explanation of the disease along the way.  In that last blog post I didn’t want to go into the finer details of what exactly EGID is, so now I want to set the record straight, so to speak, and explain in a little more detail M’s condition.

17348-custom-ribbon-magnet-sticker-Eosinophilic+Disorders+++AwarenessEGID, or Eosinophilic Gastro-Intestinal Disorders, are a complex and chronic group of digestive system disorders caused by an abnormally raised level of eosinophils within the gastro-intestinal tract.  Eosinophils are an important type of white blood cell, which normally help the body fight off certain infections and parasites and are typically involved in attacking the causes of allergic reactions, thus protecting the body.  In some individuals, the body produces too many eosinophils in a particular part of the GI tract, which leads to chronic inflammation and can cause extensive tissue damage in that area.  It is currently thought that there is both auto-immune and genetic involvement in EGID, but further research will be needed to confirm these links.  Like many inflammatory bowel diseases, EGID is a classic waxing and waning condition, meaning that the symptoms and their severity can change on a daily basis.

This family of rare diseases is diagnosed depending on where in the GI tract the elevated eosinophilic count has been found:

  • Eosinophilc Oesophagits (EE or EoE) – in the oesophagus and is the most commonly diagnosed form of EGID
  • Eosinophilic Gastroenteritis (EG) – in the stomach and/or small intestine
  • Eosinophilic Enteritis (EGE) – in the small intestine
  • Eosinophilic Colitis (EC) – in the large intestine (colon)

This last one is the type that M has been diagnosed with, which means he has, in typical M-fashion, a relatively rare type of a rare chronic illness.  Statistics are not readily available as it was only first recognised during the first half of the 20th century, but over the last 20 years, cases have been recorded in the UK and there are currently in the region of 700 cases looked after at Great Ormond Street Hospital.  This suggests around 2,000 diagnosed cases across the UK as a whole and there are also known cases of EGID in other countries, including Australia and Canada, with a starting point of 3,000 people diagnosed in the USA.

Symptoms of EGID include:

  • Diarrhoea
  • Constipation
  • Blood and/or mucous in the stools
  • Stomach pains
  • Lethargy
  • Mouth Ulcers
  • Rash
  • Asthma attacks
  • Sore throat
  • Joint Pains
  • Headaches
  • Vomiting
  • Nausea
  • Reflux
  • Failure to thrive
  • Sudden weight loss
  • Loss of appetite
  • Mood swings
  • Excessive sweating/body odour
  • Loss of colour in the skin
  • Dark rings under the eyes

None of these symptoms is exclusive to EGID and not all are experienced by all patients.  We had noticed a number of these with M in the years leading up to his diagnosis and it was the odd combination of them – diarrhoea, poor weight gain, joint pains, mood swings, excessive sweating, body odour and dark shadows under his eyes – that led to our conclusion that this could well be what he had.

As eosinophils are part of the body’s response to allergic reactions, it comes as no surprise that many people with EGID also struggle with a varying level of food and environmental allergies. What makes it even harder is that these allergies can also wax and wane and therefore can change over the years.  allergiesWhen M was diagnosed we were asked to put him on a MEWS (Milk, Egg, Wheat, Soya) free diet, which is a common starting point for those with EGID.  Over the years, we have also had to remove gluten, potatoes, raisins and raspberries from his diet to try and alleviate his symptoms and we still don’t seem to have the answer to whether this list is complete or not.  Some of the lovely families we have met through FABED have had to go a step further and remove all foods from their child’s diet due to a constant flare-up of their EGID. These brave children are now tube-fed an elemental diet in an attempt to help them feel better and grow stronger.

These families have to cope with numerous hospital visits, regular hospital stays, invasive diagnostic procedures such as colonoscopies and endoscopies, tube-feeding, colostomies, huge amounts of medicines daily and the unavoidable emotional fall-out from children who long to be just like their peers.  All of this is why it’s important that the media realises that EGID is not about “Mr Allergies” and why such factually inaccurate portrayals of chronic illnesses are problematic for this EGID Mum.

 

If you are interested in finding out more about EGID, you can also look at these sites: 

FABED   CURED    Apfed   ausEE

***Breaking news – today I received an e-mail response to my complaint from the Holby City series producer.  He has offered to look into the research done for this story-line and will discuss it with me, over the phone, later this week***