About me

44I am RB, a 30-something busy Mum of 2 and part-time accountant.  I am also the editor for the FABED newsletter, a new role that sits well alongside my blog.  Both children were born prematurely, but my second pregnancy was hard-going from the very start.

In 2011, after 5 years of battling with our local health authority, we finally got a referral to Great Ormond Street Hospital (GOSH) and discovered the challenging world of a rare inflammatory bowel disease (EGID) and multiple food allergies.  The journey has been long and stressful and there is no sign of it easing in the near future.

If I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it!

This blog has been inspired by, not only our search for an answer to M’s condition, but also my good friend and fellow blogger, theunderstudypancreas http://theunderstudypancreas.wordpress.com/

We have also just discovered a wonderful and small support group who look to proactively support families in our position.

Without these 2 things, it would have been impossible to venture along this road.

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18 thoughts on “About me

  1. dairyfreehelp

    Just found your blog (via Twitter). It sounds as if we have similar situation. My youngest has an esinophilic gastric disorder and multiple food allergies. We are under gastroenterology at Bristol Children’s Hospital.

    Well done for sharing your story. It helps to know we are not alone.

    Reply
  2. Lisa tolliday

    We are currently seeking an egid diagnosis for our 7 year old. She sounds, in so many ways, very similar to your son. I love your blog.

    Reply
      1. Lisa tolliday

        Hi. Still struggling with a whole family (4 kids) of allergic children. I can’t get anyone to see the big picture. Each child has slightly different symtoms so need to see different people. R had scopes a little while back that looked relatively ok so no one is interested in going any further with her. How and what did you say to who to get your gosh referral initially?

      2. bluesingingdragon Post author

        Hi Lisa, so sorry to hear that you’re still struggling to get any help with your children. We have a wonderfully sympathetic GP, who referred us to GOSH on a private referral and we were then able to move to our consultant’s NHS list after that first appointment. We simply said we were at our wits’ end and felt confident that there was something more wrong with M then we were being told by our local hospital. It got us into the system, but sadly at a cost. Hope that helps, but please let me know if you need anything more.

  3. tlohuis

    I luckily have 4 healthy children, but in my case, I’m the one riddled with several invisible chronic illnesses. My entire digestive system from top to bottom is diseased and that’s only a small part of my problems. I can’t even imagine any child ever having to go through this. I am so sorry. You’ve been added to my prayer list and I wish you the best and I hope that your little angels will one day be better. Take care and I wish you the best on your difficult journey.
    Peace and hugs,
    Tammy

    Reply
  4. MyTaste

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    Reply
  5. carrotsandmaplesyrup

    Glad I found someone I can relate to I am now 20 and Dr’s have been looking for 3 years for the root of my stomach problem and multiple allergies

    Reply
  6. findingmysunshine86

    Just found your blog…I was diagnosed with EGID last year, and what a turbulent journey it has been. Looking forward to reading about your experiences, thank you for writing about such a rare disease (I have been able to find so little information!). Take care xx

    Reply
  7. Rick Phillips

    At TUDiabetes.org we have a position open for a director of development. This is a chance to work in the diabetes space, and it involves some accounting – albeit it US accounting. We employ people in place so while it may not be a complete fit it might work. I just thought I would offer the lead.

    Reply

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