Tag Archives: Awareness

Recognising Allergy Heroes

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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.

A European approach to Allergy-friendly food

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IMG_0515[1]Given our Italian break was courtesy of a competition win through the Allergy and Free From Show and Dr Schär, it didn’t come as any surprise that there were several gluten-free items available at the amazing Vigilius Mountain Resort. However, what we didn’t expect were the allergy-friendly offerings we discovered from the minute we arrived at Munich airport and these were the things that possibly impressed us the most. Mike and I had a 2-hour wait in Munich before the shuttle-bus arrived to take us to the hotel. It wasn’t really long enough to venture into the town itself, but gave us more than enough time to explore the airport and its shops. I was particularly keen to see if I could spot any of the German delicacies featured on the Munich episode of Paul Hollywood’s City Bakes and was delighted to be able to snap a quick photo of freshly made pretzels to show M when we got home.

IMG_0516[1]Having exhausted most of the shopping opportunities available to us, we decided to take a quick whiz around the small supermarket before heading off to meet the bus. You can only imagine my surprise and absolute delight when we stumbled upon this fixture filled with dairy-free alternatives, including the all-important rice milk that is now a staple in our household. There was a slightly smaller unit with an array of gluten-free products too and browsing the store’s shelves and fridges, I was able to pick out with relative ease other allergy-friendly foods. I think what impressed me the most was this was a small supermarket at the airport. Not some major out-of-town hypermarket, but somewhere where travellers would stop to pick up a few essentials before heading on to their final destination. Obviously I can’t comment on what would be found in larger stores around Germany, but this bodes well for what I can only imagine you might be able to buy. We have had mixed success in finding safe foods for both M and G whilst on our holidays in the past and this summer will be travelling back to Portugal for the first time since M’s diet became so restricted. I can only hope we find as good a selection as we stumbled across in Munich.

TIMG_0552[1]he Vigilius resort is owned by Ulrich Ladurner, who is also the founder and president of the Dr Schär group and so it comes as no surprise that every meal has gluten-free options available if wanted. Breakfasts consist of an amazing buffet containing just about everything you could conceivably want – cereals, pastries, fresh fruit, cold meats, fruit juices, smoothies, cooked breakfasts and cheeses. There was a separate section for the gluten-free choices and I was pleased to see that soya milk, local goats milk and cheese and dairy-free chocolate sauce were available too. Our evening meals at the resort were delicious and despite our initial plans to visit Lana for dinner on a couple of evenings, Mike and I ended up choosing to stay in the hotel and eat in their restaurants. There are 2 restaurants at Vigilius: the delightful Stube Ida serving regional dishes and wine, and the more formal Restaurant 1500 with exquisite and interesting menu choices. The menus were clearly annotated to show which dishes could be made gluten-free and gluten-free bread was also available on request. We enjoyed every meal we had there, and whilst we didn’t choose to eat the “Variation of Carrots” for our main course – Tartar of carrots, carrot-ginger cream, crunchy carrot peel and carrot spaghetti with curry and carrot gel – ,IMG_0539[1]the “Herbs of the neighbour” dessert – Herb cookies, herb chocolate ganache, hay Chantilly, camomile Panna cotta and lavender ice cream – was phenomenal, even if the occasional thought did flash through my mind that it was a little like eating a bowl of pot pourri! We chose to drink regional wines with our dinners, grateful to receive recommendations from the serving staff, who introduced us to some that have quickly become new favourites.

IMG_0637[1]In comparison, our lunchtimes were spent at various of the many gasthauses in the mountains surrounding the resort, where we chose meals that were equally delicious, but much simpler dishes than those we enjoyed for dinner. We frequently opted to share platters of local products, such as fennel bread, speck, goats cheeses and other cooked meats and of course, washed these down with a glass of local beer. Friends have told me that eating gluten-free in Italy is relatively easy and our experiences would suggest that to be true as we found a gluten-free section to a surprisingly extensive menu in a small, remote gasthaus at the top of Monte San Vigilio. I have to confess that we didn’t put these allergy-friendly options to the test as we relished the opportunity to eat “normally” without M and G around, but Italy has definitely become a potential destination for us in the future.

IMG_0557[1]Our final foodie surprise was on our way back to Munich, at what was advertised as the “last service station before Austria.” The journey to the resort on the Monday had been non-stop, no toilet breaks or opportunity to stretch our legs even once during the 4 hour trip. However, thanks to the driver of our return journey, who evidently considered himself to be the Michael Schumacher of the public transport world, we somehow managed to save time and were allowed to stop for 20 minutes near lunch-time. As we wandered around the service station looking for something quick and easy to eat before we climbed back on board, I also kept my eyes open for any last-minute goodies I could pick up as small presents for M and G from our holiday. Amongst the bumper-sized packs of pasta, bottles of olive oil and chocolate bars, I also spotted boxes of gluten-free rice flour cookies sitting in plain sight alongside their non allergy-friendly counterparts, something I’ve never seen in a service station in this country. Our holiday was a real eye-opener when it comes to how this part of Europe tackles the matter of allergy-friendly foods and has made us more confident to spread our wings and travel there with the children when time allows.

Vigilius Mountain Resort

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IMG_0685[1]Our retreat for those four days away was the beautiful Vigilius resort, 1,200 metres up the Monte San Vigilio in the Italian Alps and only accessible by a 7 minute cable car ride. Mike and I had arrived in Lana, the small South Tyrolean town at the base of the mountain, at around 5pm and headed immediately to the cable car station, where we waited patiently for it to be fixed before we headed up to the hotel. It had been an early start and a long day of travelling, but as we stepped out into the idyllic atmosphere of this peaceful location, all the stresses and strains gently started to slip away. IMG_0595[1]We were met at the cable car station by one of the hotel staff, who offered to give us a brief tour of all the facilities before booking us a table at one of the restaurants and settling us into our room for the evening.

This is an ecologically friendly and sustainable resort, where neutral colours and careful simplicity create a peaceful retreat from the hustle and bustle of everyday life. The rooms are spacious and open, with stunning views of the mountains – the Dolomites and the Alps – on every side. It took a little getting used to the open plan nature of our room, where the bathroom area and bedroom were separated only by a strategically placed small clay wall that gives a slight nod to a sense of privacy. IMG_0524[1]Every room includes a stereo system, but no televisions, though they and DVD players can be provided on request and whilst wi-fi is provided free of charge, it is switched off by 11pm every night creating the opportunity to be as technology-free as you want during your stay. The facilities include 2 restaurants, a library, inside and outside seating areas as well as eternity pool, whirlpool and spa. It really is a place designed for relaxation and indulgence in equal measure.

Our days were wonderfully lazy as long and late breakfasts were followed by time spent alongside the pool or exploring the local area. On 2 separate days we took the single chair lift up to the top of the mountain and followed the well-marked trails to discover astounding panoramic vistas, remote churches and wonderful gasthauses where we enjoyed simple lunches of the local specialities – speck, cheese, fennel bread  – and the occasional glass of beer. We also took the cable car back down to Lana, where we spent some time searching for postcards and goodies for M and G as well traipsing between some of the 40 churches and monasteries to be found in this vibrant Italian market town. IMG_0678[1]This area is bilingual with all signs and menus written in both Italian and German – that 8-week Italian course in the 6th form finally came in handy – and we found most of the people keen to practise whatever English they could.

The resort itself offers a range of activities to its guests, including hiking, mountain biking and other fitness programs, though Mike and I only watched an archery session from afar. We did, however, spend a lot of our time in the pool, sauna, steam room and spa, enjoying the peace and quiet of the mobile-free area as we swam in the eternity pool and relaxed in the indoor and outdoor whirlpools. Thanks to my Mum, I was also able to pamper myself one afternoon with a peel, wrap and full body massage. Two hours later, I rejoined Mike poolside before we headed back to our room to prepare for our complimentary evening aperitif before a late dinner in one of the fantastic restaurants.

Without a doubt, Mike and I enjoyed a fabulous time at the Vigilius Mountain Resort and left feeling more relaxed and rested than we have in a long time. The hotel staff were friendly, polite and helpful and made our stay a wonderful experience. It was a great opportunity to spend time together, without the pressure of having to cope with the everyday juggling act that is the constant needs of the children, work and home. We wouldn’t hesitate to go back to Vigilius again should the opportunity arise and I would love to explore more of the surrounding towns of the South Tyrol.

*Disclaimer – Our 4-day stay at the Vigilius Mountain Resort was courtesy of a competition prize won at the Allergy & Free From Show Liverpool and sponsored by Dr Schar UK. The views expressed in this review are entirely my own and those of Mike.

The Italian Job

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Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

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Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

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Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up. IMG_0522[1]The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

Hollywood-inspired

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13227528_948528031911468_2074589086660293308_oIt never ceases to amaze me that there is a huge number of allergy-suffering children out there who love nothing more to cook despite their dietary restrictions. I know of so many EGID children, even those with feeding tubes, who have a passion to cook and have taken qualifications in food technology, even though there may be very little they can eat. One such story that has recently hit the headlines is of Abigail Carper, who is living with Eosinophilic Esophagitis (Eoe) in the US. She wrote to well-known celebrity chef, Gordon Ramsay challenging him to cook using only the limited safe foods she currently has and was delighted when he not only agreed, but invited her to join him in LA, where he prepared a meal that her Mum described as “a heavenly phenomenon“. It’s encouraging to hear that Gordon Ramsay and his staff also took the time to understand more about EGID, how to correctly read food labels and which foods could and couldn’t be used in their tailored meal.

Big thanks to Abby and her Mum for allowing me to share these photos of her amazing day

M and G are no different and both love watching cooking programmes on TV almost as much as I do. BBC offerings such as the “Great British Bake-off” and its recent spin-off, “GBBO Crème de la Crème”, are constant favourites in our household and nothing beats the high-energy episodes of “Diners, Drive-ins and Dives” on the Food Network Channel when there’s 30 minutes to spare at the end of the day. All of these have led to requests from M in particular for me to enter the competitions or invest in a restaurant for Guy Fieri to visit, thus showing off what he thinks of as my considerable culinary skills. Despite the massive compliments from what must be my biggest fan, I’m not convinced that my M-friendly bakes would live up to the standards expected on our favourite shows and I won’t be entering any cooking competitions any time soon. Unless an allergy one pops up and then I might…just might…be tempted!

As well as being amazed by the creativity and culinary techniques of the chefs on these programmes, I also find myself being inspired by their bakes and thinking through whether any of the recipes can be tweaked to bring something new to M’s diet. I know I’m not the only one as fellow EGID Mum and friend Berenice, kindly wrote a guest post for me last year about her attempt to create an allergy-friendly Madeira cake, after seeing an episode of GBBO. No matter the time of year, there always seems to be one programme or another that we can enjoy together as a family and this May has been no different. All it took was a single 30 second trailer and M was smitten, this time with “Paul Hollywood City Bakes“. 566777371_960, which sees Paul Hollywood, one of the stars of GBBO, visiting cities around the world, investigating their bakes, meeting bakers and putting his own unique twist on a speciality dish in each venue.

M has been entranced by the entire series, which has proven to be a great distraction from his broken leg. From the laws surrounding the baking of a particular cake in Munich, to the bullet-ridden suite, location of a mafia killing at the Biltmore in Miami, he has hardly paused for breath when regaling anyone who’ll listen with the stories that those half-hour episodes have shared. We now have a long list of “must-go-to” holiday destinations that both G and M are desperate to visit as soon as it’s even remotely possible. G was delighted to see a couple of naturally gluten-free bakes highlighted and even better, there have been the occasional bakes which I am sure I could translate into M-friendly versions without too much effort. I’ve yet to decide which of these I will turn my hand to first, but you can be certain that I will share those recipes once they’ve passed the rigorous testing of my discerning duo.

Meeting a knead

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With so much of my time and energy focused on NEAW16 throughout May as well as coping with the aftermath of M’s broken leg, I unusually spent very little time in the kitchen for most of the month, other than to whip up the regular offerings for each meal. Having taken a much-needed short break to recover, it has been time to revisit some of the recipes I’ve spotted and saved over the last few weeks to see if they could be adapted to suit M’s current dietary needs. One of the foods he really misses having is bread and barely a month goes by without him requesting a sandwich made of “real bread”Kneading-dough-007 and not just rice cakes. A couple of years ago I took a Doves Farm recipe and adapted it to suit our then requirements, and it worked. It wasn’t brilliant, but M loved it despite its foibles because it met his needs. Over the last 18 months, I’ve mastered bread-like equivalents such as pancakes and flatbreads, but hadn’t ventured back into the world of bread-making…until now.

The biggest challenge for my current bread-making attempt was the yeast. We haven’t trialled yeast with M as yet and, to be perfectly honest, I don’t imagine we’ll be doing so for quite some time as the nutritional benefit to be gained by adding it to his diet right now is negligible. We will, without a doubt, get there some day, probably round about the time M wants to start drinking beer – though obviously my baby will never be old enough for that milestone to pass! – but it doesn’t feel like a priority for the time being. Instead, I switched on my trusty laptop and started looking for yeast alternatives or, even better, recipes for yeast-free bread and found this fantastic one by FussyFoodie.co.uk, which I was able to tweak further for M. I am, as ever, extremely grateful to those other allergy-aware cooks IMG_0458[1]out there, who take their time to share their recipes via blogs and other websites as their hard work helps make my efforts a little easier as I strive to create appetising dishes for M.

I baked my final recipe twice to try out both my bread-maker and my free form bread-making skills, as well as adding different flavours to see how the end results compared. The machine mixed loaf looked great, but I found that the ingredients hadn’t really been combined enough in the pan and ended up having to remove a good centimetre or so of rice flour from the bottom of the loaf before it could be enjoyed. The centre of the loaf also failed to cook thoroughly, though toasting slices of the bread before serving did go some way to resolving that particular crisis. Both M and G were suitably impressed by my efforts, which encouraged me to give it a go a second time. This time round I hand-mixed the dough, added some herbs for a different flavour and formed small bread rolls instead of a single loaf. IMG_0491[1]These worked much better in my opinion and M certainly enjoyed the crusty outside, reminiscent of a “real” bread roll, almost as much as the warm centre that had been spread with some coconut oil to replace the butter. I will definitely be baking this bread recipe again and may even try to co-ordinate my cooking so that M can enjoy his chicken burgers in a bap!

Lasagne – an unusual last supper!

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I’ve been fascinated looking back over the last 4 awareness weeks and seeing how our approach to “Eating like M” has developed over time. When we first started in 2013, we chose to eat the foods that M could eat at the time, even if they were things he wouldn’t have touched with the proverbial barge pole such as mushrooms, tomatoes or courgettes and followed the lead of other EGID families by eating exactly the same as him on the Friday, including the much-dreaded Neocate Active. Year 2 followed a similar approach, though Mike matched M mouthful for mouthful on the Friday to truly understand what it felt like to be on his diet and again drank the obligatory pint of Neocate for full effect. By 2015, M’s diet had changed dramatically and when we hit NEAW15, he had only 3 safe foods he could eat. Despite initially rejecting the idea of eating like M, IMG_0496[1] Mike and I decided we would once again support him through what was proving to be an extremely challenging time and agreed to spend the week with just 3 foods making up our 3 meals with a litre of E028 to wash it all down for Mike.

2016 has taken us another step forward in our “Eating like M” adventures and this year saw G choosing to stand in solidarity with her brother and join in our week with just 5 safe foods. I am so proud that she decided to take part in this challenge with us and stoically managed the week without complaint. Once again, our week led to opportunities to share our family’s EGID story with others, including Mike’s discussions with fellow attendees at a fully catered RICS training course in London. He had expected the standard buffet lunch to be provided and had armed himself with rice-cakes and apples to get him through his day, so the hot meal that was prepared on request to meet these strict dietary requirements was a more than pleasant surprise.

One of the highlights of the week for me was our final meal on the Saturday night. I had been looking for the perfect opportunity to try out what was, to me, a completely new product and our last M-inspired dinner gave me that chance. I first heard about this product back in February at the #FFFA16, when fellow judge, Stanley Montwedi, founder of online shopping website FreeFromMarket recommended it to me and couldn’t stop raving about how amazing it was. IMG_0469[1]With NEAW16 in mind, I had ordered a couple of boxes from him and knew exactly what masterpiece I’d be whipping up next.

As a family we have always enjoyed eating pasta, but M’s food restrictions have made enjoying a variety of different pasta dishes almost impossible. Thanks to this new-to-me range of products, that is no longer the case. Rizopia Organic Brown Rice Lasagne was actually the winner of the 2015 Free From Food Awards Pasta & Pizza category and I must say that it was definitely a worthy winner. I used it to make a M-friendly chicken lasagne, layering strips of chicken with the pasta sheets and lashings of white sauce flavoured with basil and oregano. I didn’t pre-soak the sheets as per the cooking instructions, but given the limited sauce that could be added to my lasagne, we all found them quite chewy, so I think I will try soaking them beforehand the next time I cook it. And believe me, there will be a next time because the whole family was impressed with this dish. M enjoyed it so much that he asked for it for lunch and dinner 3 days in a row and was most disappointed to discover that it did eventually run out! The Rizopia rice pasta range includes lots of different shapes of pasta which are all safe for M and will add some much-needed variety to his meal-times.

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When home life met the school science class

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It does sometimes take a while for me to catch up on my blog with what’s been happening in real life, but a near 4-month gap to report much be something of a record, even for me. I’m not entirely certain why it has taken me so long to share this story, but I can only imagine that the constant stream of events since the start of February pushed it out of my mind and it was only thanks to a search through some old photos last night whilst I was looking for something else, that my memory was jogged and the subject for today’s post settled. What now feels like many moons ago, G was set a creative homework, something that she was excited to do, but a little stumped as to the direction she wanted to go. The task was to make a model of a cell for science and the options available were seemingly endless. checkThere were no strict guidelines as to the type of cell to be created and she had free reign as to the medium of her model, with even cake being a possibility if she so wanted. As is often the case when tackling the more challenging pieces of homework set, G and I spent some time discussing at length what she could do before reaching a decision.

She had made a few uninspired suggestions, but I could tell her heart wasn’t really in them and her enthusiasm waning. G loves being creative, art being one of her favourite lessons at school and I knew that if we could only settle on the right cell, she would soon warm to the subject and give her all to making the best model she could. So often I’m reluctant to drag EGID into G’s world any more than is necessary, but this time I wondered if researching and then making a model eosinophil would be the answer to her dilemma. 10562609_10153256228956123_3212893174847273723_oTo my relief, as my fount of inspiration was certainly beginning to run dry, she loved the idea and instantly sat down to research as much as she could as, whilst we know all about what eosinophils do in the body, we didn’t know what an individual cell looked like.

Having found some good images on the internet, G then addressed the matter of her model-making. Despite an initial yearning for cake-baking and decorating that appealed to her 12 year-old senses, although a lot less to me, we instead headed off for a trip around our local craft shop and pinpointed the few essential items that would effectively illustrate the structure of an eosinophil without requiring too much parental input and inspiration. A quick tutorial once we were back at home on how to best construct her cell gave her all she needed and I left her to it at the kitchen table, whilst I busied myself in the same room, preparing packed lunches and dinner. Her finished model was fantastic and the diligent labels indicating the different part of the cell were the result of her focused efforts and careful work. What’s more, her model eosinophil proved to be the catalyst for other work that she chose to similarly link to her experiences of EGID and which ended up with her showing last year’s NEAW video to her science class to teach them more about the condition. G has been rewarded for her hard work by her science teacher with some much coveted house points and we’re so proud that she felt confident enough to share an aspect of her home life with her school science class.

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NEAW 2016 – All over for another year

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With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

NEAW 2016 – Teaching the world

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It’s what this week has been all about. A daunting brief when you think about it, something you never expect to have to do, but sometimes life has a funny way of turning all your plans and perceptions and pre-conceived ideas on their head and sending you off in a completely direction to the one you expected to take.

Without a doubt, every new parent looks forward to the journey they’re about to embark on, albeit often with more than a little trepidation about how they will cope and they start with ideas about how they will deal with feeding and sleeping and routines. They might plan to follow in the footsteps of parenting gurus like Dr Spock, or Gina Ford or Jo Frost, after all they’ve read the books and seen the TV shows; or perhaps they think they will take a more relaxed approach, where routine is dictated by the child and everything becomes an opportunity to learn. Of course, you quickly realise that however much you’ve studied the subject beforehand, your baby hasn’t read the same manual and your best-laid plans go out of the proverbial window. No matter the milestone reached – that heart-melting first smile, the scent of your newborn as she snuggles into your arms, the infectious sound of his giggle, 858052_10151297690626123_2130461112_othat quizzical first taste of food or teetering first step – as Mum or Dad you’re there to love and encourage and cheer them on.

When we started our family, Mike and I prepared ourselves to answer their every question as best we could. We anticipated having to deal with the never-ending whys and knew we would need to find truthful words to reply to the most personal questions with simple honesty. We understood our role was to teach them about the world surrounding them, even the unpleasant bits, and equip them with knowledge and understanding and the skills to withstand the buffeting winds that life would inevitably send in their direction. We couldn’t know what storms we would need to weather together

There’s no question that having the responsibility of educating our community about the most precious of subjects is often scary, but it’s one I embrace wholeheartedly and honestly feel that it’s a privilege to have found ourselves in this role. It’s about so much more than being M’s advocate or defending G’s corner, although those form the greatest part of my job. It’s about sharing the lessons I’ve learned and, with that, it has become about explaining to others the nature of M’s chronic illness and the impact it has on our lives. This morning we spent a few hours at our community market, our information boards proudly on display, leaflets ready to hand out, a few bits and pieces placed to try to raise even the odd penny more for Over The Wall and most importantly, a smile on our faces that meant we were willing to answer questions, to explain, to share even the tiniest bit about EGID.

By the time we finally gave in to the cold and the rain, packed up and left, I had spoken to over a dozen people, who wanted to learn a little more and were genuinely interested in what we had to say. Not only had we had opportunity to teach our community, but I found that in response, people had felt able to share their stories and really talk about things that were close to their hearts. A lady whose daughter had been oxygen-starved a birth over 30 years ago and who had sadly lost her last year was able to empathise with the challenges of juggling family life and meeting G’s needs as much as we do those of M. Another woman, who had been diagnosed with Coeliac disease a few years previously, shared her disappointment that those around her still struggled to offer gluten-free options, d5de7-screenshot2014-05-14at20-22-03instead simply opting for something “safe”, but infinitely less satisfying such as fruit or yoghurt to replace the cakes and biscuits they were enjoying. And a family, who had seen our story in the paper and were longing to talk to us about their daughter, who had been struggling with gastro issues, eating disorders, anxieties and food intolerances since she was 11 and even now, at 37, found the medics lacking insight and understanding and unable to help. I don’t know that really I could give more than a sympathetic ear and insights from our own experiences with M, but I also know just how valuable those small things can be.

Have we achieved what we were hoping from this week? I think so. I’m proud that we’ve worked hard as a family to raise awareness of EGID and hope, that in some small way, we have taught our world a little more about it.