Tag Archives: medical community

Perfect Faces for Radio

Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.

Recognising Allergy Heroes

MzQ1QzM3M0E4MzFCNjM4QjYzMUY6YWUxNzkyMGNiZWRkMjJhNGIyYWI2YTNlNDZiNGJjODM6Ojo6OjA=Whilst we’ve been settling back into life at home after our amazing Italian break, it hasn’t escaped my notice that in the last couple of weeks there have been 2 sets of awards launched – both relating to allergies and both looking at vastly different aspects of the allergy world. One is celebrating people who support allergy-sufferers, be it in a professional capacity or a more supporting role at home, and the other looking for restaurants who go that extra mile to make meals out an option when living with food allergies. The one thing they’ve got in common is that they’re both looking to give recognition to those individuals and organisations whose tireless work makes a difference to those living with allergies and to celebrate their efforts. To make sure I focus equally on both awards as they are both incredibly important in my opinion, today’s post will look at just one set of awards and the other I’ll discuss in my next blog post.

Allergy UK Hero Awardshero-awards-(logo)_cropped_200_165 – this year marks 25 years since Allergy UK came into being as a national charity that is now thought to support around 21 million allergy sufferers across the UK. Not only do they provide a comprehensive support network including a dedicated help line and on-line forum, but they also endeavour to educate those health professionals who work with patients living with allergic conditions. To help celebrate this anniversary in style, Allergy UK has asked for nominations for their Hero Awards, which will recognise the efforts of individuals to help, support and encourage friends, family members and any in their local community who are living with allergies.

There are 5 different award categories to choose between and nominations must be made before 1st July 2016:

  • Child Allergy Hero – a child or teenager (up to the age of 18) who has had the courage to help or has saved the life of an allergy sufferer
  • Family/Friend Allergy Hero – a family member or friend (over the age of 18) that has shown courage and commitment to their allergic child/parent/carer/sibling/other
  • Community Allergy Hero – an individual who has gone beyond the call of duty and has helped, improved or saved a life of someone with allergy in their community
  • Healthcare Professional Allergy Hero – a member of the healthcare profession who helps and manages the allergic patient’s condition and who provides on-going care with commitment, compassion and communication
  • Clinical Team Allergy Heroes – a team of clinicians who have shown care, compassion, communication and commitment to help their allergic patients

awardI am delighted to see that the awards are open to just about anyone and not restricted to healthcare professionals. All too often the unsung heroes are the family members and friends who live with allergy sufferers and the ups and downs that life with allergies throws at them on a regular basis. To be able to give much-deserved recognition to these people is fantastic, although it’s good to also have the opportunity to nominate anyone from the medical community who has provided truly exceptional and perhaps personal care. I will be making my own nominations soon and would urge you to do the same if you feel there’s someone out there who has made a real difference to others living with allergies. The allergy world is often surprisingly small and tight-knit, so I’m looking forward to seeing if any familiar faces have been recognised for all that they do for those of us trying to survive the presence of allergies in our everyday lives.

To vote, please click on this link to the Allergy UK website. It’ll only take 10 minutes of your time and could give a real boost to an unsung allergy hero.

NEAW 2016 – #MoreThanFoodAllergies

The headline in our local paper for this year's #NEAW focuses once again on the allergies

The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Eliminating foods from dietOf course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, 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.  The 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.

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

icebergWe’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

My One Constant Companion

HS_Birthdays_30thToday I’m celebrating a very special day, a milestone birthday of a very different kind. Google has revealed that Steve Jobs, Ben Miller and Kristin Davis were all born on this day, but as interesting as that is, I’m not really celebrating their birthdays. Today is my Godmother’s birthday, but it’s much more than that too. Today also happens to be my birthday, but, according to my birth certificate and my Mum, both of whom I trust implicitly, I’ve got another 366 days to wait until I reach my next noteworthy milestone, so my birthday celebrations this year are relatively low-key. Despite all these great reasons to celebrate, today I’m marking 30 years of one of the most significant events in my life:

30 years of living with T1D*

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This is me, the Christmas before I was diagnosed

With a less than auspicious twist of fate, my life changed completely on the day I celebrated my 9th birthday and, believe it or not, 30 years on I can say that it arguably changed for the better. Don’t get me wrong, I would give anything to not be living side-by-side with a chronic illness, but the events of that day enabled me to return to much improved health and, most importantly, haven’t stopped me doing pretty much anything I’ve wanted to since then. After months, and maybe even years, of displaying what are now the well-recognised symptoms of undiagnosed diabetes – think excessive, unquenchable thirst; massive weight loss; increasing and unexplained lethargy and a constant need to wee – an unexpected collapse at school led to an emergency hospital admission, a fear-filled night as my parents had to face the unimaginable possibility of losing me and finally a diagnosis that would shape the way my future unfolded. Without even knowing it, and certainly with little regard for my opinion, this uninvited visitor came and took up permanent residence in my body, where it has lived in varying degrees of co-operation since the mid-1980s.

The last 30 years have seen amazing developments in the care of T1D, but the most momentous event actually happened 65 years before my own diagnosis. Before 1921, my parents’ worst fears of that night would have been realised as, until the discovery of insulin at the University of Toronto by Banting and Best, SAM_0827those diagnosed with diabetes mellitus had no chance of survival and could only delay death from the illness itself by starving the body instead. Their discovery followed on from the hard work of  other scientists and medics from around the world such as Oskar Minkowski, Joseph von Mehring and Paul Langerhans, for whom the cells in the pancreas were named, and I doubt that any can deny the life-changing impact that the discovery of insulin has had on those of us living with T1D.

My first decade with T1D was heavily influenced by the incredible mind of my consultant, Professor B, who was compassionate, understanding and impressively forward-thinking in his approach to my care. One great example of his progressiveness is reflected by the DAFNE (Dose Adjustment For Normal Eating) approach to T1D management, which teaches PWD** to “…match their insulin dose to their chosen food intake on a meal by meal basis…“, and which was introduced to mainstream diabetes care in 1998 as a somewhat revolutionary new step. I somewhat nonchalantly shrugged my shoulders at the announcement as I’d been following that regime for around 10 years before it was accepted as being effective by the rest of the diabetes world, all thanks to Professor B and his focus on helping to improve my teen struggles with T1D.

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My collection of Novopens!

Likewise, within 2 or 3 years of diagnosis, my “futuristic” disposable syringes and bottles of insulin, which had replaced the glass syringes and metal hypodermic needles of the 1950s that needed constant sterilising and re-sharpening, had themselves been replaced with one of the first models of the Novopen. This was the first insulin pen injector of its type and combined syringe, needle and insulin bottle in one unit. I worked my way through several upgrades of the Novopen and these days use a combination of a pre-filled disposable pen injector and the last pen injector that I had, a green Novopen 3, which still works in impeccable fashion nearly 20 years on from when I was first given it. Two decades on and I’m so excited to have embarked on another adventure, this time with the relatively new innovation in diabetes care, the Freestyle Libre system for blood glucose monitoring. Whilst I’m not at the forefront of PWDs trialling its use, I have offered to collect data concerning my usage for a research student looking to compare blood glucose monitoring behaviour following the use of the Freestyle Libre, a study that I would hope would encourage some NHS funding for these short-lived sensors which really could revolutionise T1D for many.

To put the last 30 years into context, I worked out some quick statistics of what 3 decades living with T1D has meant for me:

  • An average of 3-4 BGLs measured a day, sometimes a lot more and sometimes considerably less, adds up to around 43,838 blood sugar tests…
  • …and assuming equal use, though the truth is anything but, each of my fingers has been pricked nearly 4,500 times.
  • There’s been in the region of 41,636 injections to keep me healthy…
  • …most of which have in my thighs, bum and upper arms…
  • …although, after 25 years of steadfast refusal to consider anywhere else, I now inject almost exclusively in my stomach and have the bruises to prove it!
  • I’ve been involved in several research projects since almost day 1, including one which resulted in the longer-acting insulin I now use on a daily basis…
  • …and more medical students, visiting foreign doctors and interested consultants than I care to remember…
  • …and the involvement of both G and M in current research to investigate a possible genetic marker for T1D.
  • One amazingly fantastic juvenile T1D consultant, considered to be one of the top men in the diabetes world, around the world
  • …and another who I remember joining my team as a junior doctor at our local hospital and who is now a Professor in this field in that same hospital…
  • ..as well as the care of another unrivalled T1D consultant during both my pregnancies to ensure the safe arrival of my babies and my continued health too.
  • And there have been the inevitable times in hospital, particularly during my emotion-ridden years and fortunately only 1 major complication resulting from my teenage rebellion stage.

A cure may not yet be in sight, but with the amazing developments of the last 100 years, who knows what the next 30 years will bring?jdrf-ndam

 

*T1D – Type 1 Diabetes                                                                                                                      **PWD – People With Diabetes

Another food and an unexpected insight

This moment has been an awfully long time coming, over 4 months and 7 food fails in a row in fact, but finally we have a fourth safe food to add to M’s repertoire: apple.  The last few months have been emotionally tiring as we’ve worked our way down the list of food challenges agreed with our dietitian and M has systematically, and holy-grailsometimes dramatically, failed each and every one.  It has felt as if that elusive fourth food was our personal Holy Grail and there were times when Mike and I both began to wonder when we would ever achieve it.

One of the complicating factors we’ve had to deal with during the food challenges has been the whole host of reactions that we’ve seen along the way.  We were never told, as far as either of us can remember, that it was possible to see so many different allergic responses to the varying foods M was trialling and we were certainly not advised that he could experience some that he’d never had before.  His severe oral reaction to sweet potato was, in many ways, the easiest one to identify, even though horrendous to see happen, as we knew immediately that it had to be an instant fail; but the others have not necessarily been so straight-forward.

complicatedOur main goal is to maintain the improved health and toileting that M has achieved since he first went elemental back in December and even though that has meant ruling out some foods that would have been great to have back in his diet, I remain firm that his well-being, both physical and psychological, is our primary concern.  At our last appointment, we discussed with both M’s consultant and dietitian our approach to the food challenges and agreed that anything that causes a loss of bowel control, of any description, has to be considered an instant fail for the time-being. These foods are not ruled out permanently – well, sweet potato is as far as I’m concerned! – and we will, without a doubt, revisit them at some future point once we have more safe ones back.

Sadly he has reacted to some of his old favourites, but he has coped admirably well with accepting the outcomes.  He still remains reluctant at times to acknowledge exactly how he is feeling and telling us about the aches and pains we know he must be experiencing, but 9 years of parenting M means that I have become highly attuned to his moods and can sense when he’s feeling under the weather.  His willingness to lose a food again at times has indicated to us that he also identifies when it’s making him feel poorly, especially when he has been prepared to fight for those that he believes he can cope with.

Never was that so true as at the start of our apple challenge.  During the first couple of days, his body reacted with hives and itchy skin, just as we saw when we first reintroduced rice and he also struggled a little with his bowel control.  However, unlike with other foods where he has reluctantly agreed that it was likely a negative response to the challenge, this time round M insisted that the fault was his for not listening to his body and responding quickly enough and that he felt he was still in complete control.

10 days on and he has proved to be right, which is a valuable lesson for us all:

We have spent years fighting for our voice to be heard when it has come to M’s health and each step of the way have been shown to be right in our concerns and our thoughts for his ongoing treatment.  It seems that now we need to start listening to what M has to say too and take into consideration his opinions and insights about his body.  Of course, at 9 he is nowhere near old enough or responsible enough to make his own choices or sway our decisions unduly, but, just as I have spent a long time arguing my place as the expert on the subject of M because I’m his Mum, now as Mum I need to encourage him to be his own best advocate and take an active and involved role in his care.  After all, that’s a key part of my parental role.apples7

And whilst I ruminate on this latest insight into M’s development, I’m eagerly gathering ideas and recipes to incorporate apple, in all its glory, into his diet.  So far, we’ve ventured little further than apple juice, apple slices and apple pancakes, but with the help of good friends, including one whose son is just a few steps further down the food challenge road than M, and great resources such as The Recipe Resource, then apple crumble, apple crisps and apple cakes are all on our horizon.

 

Because #livinginfear is not *just* about the allergies

I wrote yesterday about the #livinginfear campaign and started thinking about what that really means to me.  I quickly realised that #livinginfear is not what I want for M or, indeed, for G.  It is so important that they are both aware of their allergies and that M, in particular, could suffer adverse reactions to the foods he eats.  They must take on responsibility for their own health when away from home and have an understanding about what they eat and what they have to avoid.  They need to know how to deal with mild reactions and how to communicate their needs to the people around them, especially when in new situations, or when Mike and I are not there to speak up on their behalf.  After our experience with the sweet potato trials, they now know that there could be other, more serious reactions that M’s not experienced before and that they could be frightening.  Most critically, I need to teach them how to respond calmly should those reactions occur.

dsc02717However, the most important thing is this: that my children are still children and whilst living with a chronic illness has forced them both to grow up a little faster than their friends and peers, I don’t want them shouldering adult worries or concerns, or feeling weighed down with fears that may never be realised.  Until the point when they reach their majority, I want my children to laugh, play and simply live each day as children, trusting that Mike and I will always be there supporting them, ready to catch them when they fall.

The truth about #livinginfear for us is that it is my burden to bear and is about more that just the potential for serious allergic reactions.  My fear is not even about M possibly suffering from anaphylaxis one day as, although the prospect of facing that is daunting, I trust that my parental instincts and ability to stay calm under pressure would get me through that most difficult of experiences.

No, that weekend highlighted for me what my true and biggest fear about his allergies and his health really is:  that I will not be believed…that I will become “that” parent…and that the health professionals involved in my child’s care will doubt what I say, thinking I’m causing a fuss about something that is simply not true.  The years spent chasing a diagnosis despite everything the doctors were telling us have taken their toll on my self-belief.  I second guess myself at every turn.  I discuss and dissect and deliberate my every waking thought about M with Mike to check that I’m not going mad, that he, at least, understands where I’m coming from and that I’m not being unreasonable or over-reacting to the situation.

Nothing demonstrates that self-doubt more than the fact that I insisted we tried M on the sweet potato again the following day when Mike was there, just so he could see the reaction for himself and confirm that what I had seen, and M had experienced, was true.  Despite my natural concerns that it could have been an anaphylactic reaction, I needed Mike to be an eye-witness to it too and I had our back-up plans in place, just in case his response was even worse that time round (fortunately it wasn’t).  I didn’t want to put M through the terror and pain of the reaction again, what parent would, but I needed to be certain that I hadn’t imagined it to be more extreme than it actually was.

I know that my confidence has been shattered by the very people who should have been supporting me and my family every step along the way – the medical professionals we’ve encountered on our journey.  I am no longer comfortable in trusting my gut instincts about M’s health, even though I have been proved right time after time after time; and that’s simply not acceptable.

willowtreeBeing a parent is a hard enough job when you have a happy, healthy child – there are no superheroes living in secret in my local community as far as I’m aware; but the burden quickly becomes overwhelming once you throw a chronic illness into the mix.  I find myself not always being able to state my case clearly or argue M’s corner when it matters most and I lie awake worrying in the middle of the night that the treatment I’ve demanded may not be the best course of action, or whether there was anything I forgot to mention at the most recent appointment.  I know myself to be a strong, intelligent woman and yet I find myself being instantly returned to my school days, with all the mixed emotions of being sent to see the Headmaster, the minute I find myself facing a consultant.

And I worry that G is getting lost in the chaos that is hospital stays and food allergies and medicines and diagnostic tests and the relentless need to monitor, record and report everything.  As she approaches her SATs and the prospect of moving up to “big” school looms ever nearer, my firstborn is growing up fast and I wonder how our relationship will survive the inevitable traumas of her teenage years when my focus so often has to be on her younger brother. Time together is rare and incredibly precious and something we both need and enjoy because I’m fully aware that I’m not necessarily getting this parenting thing right.

So, raising awareness this week has to be not just with the general public, although that is undoubtedly critical to protect the allergy-sufferers around us, but within the medical community too.  For most of us, you are our firefighters and the people we are forced to depend on in our darkest moments.  We need you to be strong, focussed and the experts that we are not, BUT we also need you to be gentle, compassionate and understand that you are holding the future of our most precious possessions in your hands.  Don’t dismiss our concerns, but believe that we know our children best and have an insight or opinion that is just as valid as your professional one.  Don’t belittle our emotions, but be empathetic when they overcome us and we need a shoulder to cry on more than anything else in that moment.  Be honest, but in the kindest way, knowing that your words have the power to break us when we least expect it.  Most of all, understand that we are constantly #livinginfear about our children’s health and life, so they don’t have to.