Wednesday, 21 May 2014

Fabed from the Beginning - Guest Post

Unless you are new to the Recipe Resource, you will know that this week is EOSINOPHIL AWARENESS WEEK which is being co-hosted between 
APFED in the USA and FABED here in the UK. 


FABED is a wonderful charity which support those of us living with the confusing nightmare that is all too often EGID/ Simply put, EGID (Eosinophilic Gastrointestinal Disease) is an inflammatory condition thought possibly to be autoimmune. It involves the immune system, in a local response to food and environmental proteins. These ARE allergies, but like Coeliac Disease, Crohns or something like eczema it's a local reaction, not a systemic (whole body) response so you cannot test for these types of allergies. EGID can only be diagnosed by Biopsy.  

Here is the story of the wonderful Lucas family, dealing with multiple cases of EGID and how FABED was started.



FABED from the Beginning

Back in the olden days when Emma-Kate asked us to write a guest post for the excellent Recipe Resource (well it seems that long ago!), we said “No problem, will have it to you in a flash”.  Well it’s finally here, so as every one knows it’s now time to sit on the carpet in a circle, legs crossed and listen to the story... (or pour a large glass of something, you may need it by the end!)

FABED was conceived in 2005 and became into being in 2006.  It was the brainchild of 2 families (Lucas and Cordell), after visiting the APFED annual conference and leaving a little shell shocked.  As to the why we felt the need, it is important to understand the family story.  The Cordell family story that started the whole chain reaction is here, we have never really told ours, what follows is a VERY abridged version (honestly, this really is the short one) of the Lucas family WHY?

The first of our 2 boys ( J ) was born in 1997, followed by a little brother ( C ) in 1999 and finally a sister (A-G ) in 2001.  The overriding factor in all 3; horrendous pregnancies, all manner of complications with mum and baby and all sorts of everything taken to keep healthy(ish) and safe.  By the time C was born, J was already confirmed with an IgE reaction  to Cows Milk, pollens and unable to tolerate specialised formula milk  - and something called Allergic Colitis was being talked about.  
C came out screaming and it is difficult to remember him stopping for the next 2 years.  The Paediatric consultant in Northern Ireland kept citing “toddler diarrhoea” to explain the 25+ nappies a day (until we deposited one on his desk, freshly filled of course) and finally sent us for a myriad of tests at the RV Hospital in Belfast, complete with armed escort.  

We couldn’t do an internet search as Northern Ireland in the mid to late 90’s had barely heard of Tim Berners-Lee, never mind this thing called a “search engine”.  Scope after scope and admission after admission followed, Allergic Colitis was still the only explanation, although the nice Dr from England we had been seeing at the RVH had started to explain how the gut was misbehaving 

We reluctantly moved back to the mainland and came under a consultant at a large Children’s Hospital in the middle of England.  More scopes were ordered, allergy tests, bloods after bloods.  At the follow up from the latest scopes, the consultant reported nothing significant and we would carry on in this vicious circle again and she left the room to get something or other.  It was at this point we had what may be described as a bit of a eureka moment, there on the Dr’s desk, open was both files  and in big letters at the top of the top document was “EOSINOPHILIC GASTROENTEROCOLITIS”.  This person (the term Dr ceases to exist at this point) refused to discuss so we went home repeating it like a mantra.  We turned on the computer and mowed the lawn whilst Internet Explorer started (dial up, remember it ?).  Well if the internet at the time was to be believed, what the boys had was a disease most prominent in cats!!

The person formally known as Dr proceeded on maternity leave and a mumbling, softly spoken Dr was drafted in to cover the gap (remember the nice DR in Northern Ireland!).  At first reluctant to reveal details he gave in and told us all about the diagnosis, and finally tried to find practical plans to try and help.  We’re still with that mumbly, quiet but ultimately, remarkable Dr.  Not remarkable in curing or resolving this disease or the hospital he is at;  (The Gastro Department is horribly overloaded, the administration a shambles and the communication to other professionals frankly a joke.  No, remarkable in the obvious care he has for our children, the pain and angst he visibly shows when discussing the latest plan/results and always been realistic, no promises.

A move of job meant a move of hospital, luckily the mumbly man was going back to his hospital and took all 3 of the children on as his patients (did I mention by this stage, A-G was diagnosed with Eosinophilic Colitis?).  Over the next couple of years, C deteriorated badly and we had so many sleepless nights and a private parking space in GOSH, mumbly man was running out of ideas and his colleagues all had a look without adding anything new to the picture. We knew of nobody else in this position, surely we couldn’t be the only people in the UK? Then we  heard of some in America with it in the Oesophagus only, known as Eosinophilic Oesophogitis.

Searching the internet in desperation one spring night in 2005 we found an article about a little boy called Samuel who seemed to be exactly like C at a similar age.  Mum phoned the newsletter, who put us in touch with the author.

We were offered the chance to go to Cincinnati with other families from a now defunct charity for the 5th APFED conference.  We were excited, a whole weekend dedicated to EGID, we would learn so much… What followed, information wise was a crushing disappointment.  Not a single Dr was willing to discuss anything other than EE (now known as EoE), not a crumb on any other part of the GI tract and seemingly no idea.  Now before anyone wails in derision, we completely understand the reasons now, but at the time we were deflated and considerably poorer.  (Although we were now fans of baseball and met some lovely friends.)

And that is our WHY!!  A country holding its 5th annual conference could not or would not shed any light.  We set up a website and a support group online and plodded along until 2010 and a couple of friends offered to do some small fundraising events.  So, we registered as a small charity to gain all the benefits of tax relief etc... until some fool (you know who you are Mr G)  sent us almost £5k to take us over the registration threshold and in August 2011 we became Registered Charity number 1143267.  

What has followed is a realisation of just how hard it is to run a charity.  There have been many occasions when we have said “enough, let’s give in we are never going to get anywhere”.  The thing that always stops us is YOU!!  

The readers of this who already are or may in the future be our members; The members who go out of their way to help others; Anyone who fundraises, especially those who know nothing of FABED;  the e-mails and private messages that thank for the tiniest crumb of help;  Those, like Kate who bang the drum knowing (like we did 8 years ago) it is for future generations.  It is the knowing that what we do might help one family struggling to get to grips with EGID that drives us on.  


We are destined to be a very small fish in shark infested water, but as long as we can survive and keep swimming, that’ll do.  We will never be the biggest or best charity but by god we will be giving it a good go.  This week is National Eosinophil Awareness week, show your support by sharing this blog, changing your profile pic just for one day or visit our Facebook page and give it a like.



22 comments:

  1. Really informative post and it sounds like you have been on quite a journey!

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  2. hope all goes well for you but what this disease and abbreviations mean?!

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  3. Food is one of the most difficult challenges in lots of mums' lives (oooh how I envy those parents whose children will eat anything!) but you really do have to take it to the nth degree and it must be so difficult for you. You're doing a great job of raising awareness though and it really does help to educate us others so we can appreciate and understand x

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  4. Well done for bringing more attention to this disorder.

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  5. An informative post which I've shared on Twitter - I hope that your charity helps the people that it needs to. good luck x

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  6. I can not imagine a child suffering from this. I find meals a challenges anyway without bringing other issues in to the kitchen

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  7. There's nothing more frustrating than a doctor who's challenged in the communication department. Healthcare should be a two-way relationship, without input from the patient (or patient's family) they would find it very difficult to make a diagnosis. Why some of them have to act like they work for MI5 is beyond me. Well done for hanging in there and never giving up.

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  8. This must be an awful condition I haven't heard of it so thank you for bringing it to my attention

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  9. Great post and well done for raising awareness. I bet they loved the nappy being put on the desk!, but well done for being so proactive x

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  10. weldone and best of luck on your continuing journey , very informativ post thankyou for sharing x

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  11. I knew eosinophils were linked to allergies, but din not know things could get so complex. A very informative read.

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  12. I hadn't heard of EGID so thank you for raising awareness and educating others about the intricacies and complexities of living with this.

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  13. haha love the Mr G comment, got to love a donor eh!

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  14. Oh wow! How completely frustrating for you. Well done on fighting and raising awareness, i hadn't heard anything like this before. x

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  15. Very interesting and informative piece. Hope that many more people are helped through you raising awareness about this.

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  16. Great post about something I know nothing about. Thanks for the information I am sure it will come in handy.

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  17. I have never heard of this before. Good luck raising awareness

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  18. I was completely in the dark about this; I hope you can raise even more awareness!

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  19. I have never heard of EGID before but I can definitely agree that it's SO hard to run a charity. Good luck!

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  20. It's so important to highlight awareness of lesser known conditions. I myself am a Zebra - referring to the old adage 'when you hear hoofbeats think horses'. Dr's are trained to listen for horses, so it's very easy for us Zebras to fall through the net. All the more reason for us to help raise awareness of the conditions that effect ourselves and our families.
    Love Vicky
    Around and Upside Down

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  21. Really informative post.
    Thank you for sharing all of this information with us.

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  22. Welcome! Such an informative post even with knowledge of allergies and a brother with gut disease, there's a lot I didn't know. Thank you so much for sharing :)

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Many thanks for taking the time to comment!

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