The story of Sarah
Bella was born in 2003 and for the first few months of her life, we did not notice anything unusual, to us she was your typical happy and beautiful baby. However, when she was four months old and we took her to the child health nurse for her regular weight and measurements we were alerted that she had stopped putting on weight, that she had begun to ‘fail to thrive’. Being a new mum it was a term I wasn’t familiar with and it still gives me chills to hear it as we have been living with this term all her life.
This ‘failure to thrive’ began even before solids were introduced. In the months that followed we saw several doctors and paediatricians all with different opinions and no answers as to why she wasn’t growing and I continued to breastfeed her until she was 13 months old, with me removing milk from my diet when she was about seven months as we knew from then that she couldn’t tolerate dairy as she would get an immediate rash when we trialled formulas – including hypo-allergenic formula.
Finally, at 18 months old she was referred to a gastroenterologist for an endoscopy and she was diagnosed with the rare disease called eosinophilic oesophagitis (EoE) – a condition we had never heard of. All I could do was ‘google’ it as there was no information about it in Australia.
EoE is the most common of the eosinophilic gastrointestinal disorders (EGID). When Bella was diagnosed 13 years ago it was a rare disease affecting 1 in 10,000 people. Over the years, the prevalence has increased and it is now thought to affect more than 1 in 2,000 people. We unfortunately do not have current prevalence data in Australia. EGIDs occur when eosinophils (pronounced ee-oh-sin-oh-fills), a type of white blood cell, are found in above normal amounts within the gastrointestinal tract. The eosinophils attack foods (or airborne allergens) creating an allergic response and cause inflammation wherever they may gather, in Bella’s case it’s in her oesophagus.
Looking back to before her rare disease diagnosis, Bella never showed any obvious signs of pain, but we later worked out, that she just didn’t know any other way of feeling. When she became vocal she could explain her tummy aches and ‘bubbles’ in her throat. She also has other symptoms including difficulty swallowing, food avoidance, chest and leg pain. In the months after Bella’s EoE diagnosis she underwent allergy testing and we received confirmation that she has multiple food allergies, and is at risk of anaphylaxis to milk, egg and fish. Over the years it has been a lot of trial and error to find out her EoE triggers and her allergies have also changed with her outgrowing some and gaining more allergies. Bella has an endoscopy each year to check the status of her EoE and has skin prick testing yearly also to check if she outgrown any of her allergies. She currently needs to avoid milk, egg, fish, soy, chicken and peanut. She also has rhinitis, asthma and eczema. Through most of this, her main source of nutrition, and as a treatment for her EoE, was an elemental formula. She began drinking it when she was 18 months old and continued to do so from her favourite sippy cup until she was six years old, when unfortunately, it just became harder and harder for her drink enough of it. She was seven years old when she had a feeding tube inserted into her stomach and it served her well for nearly four years. During that time, she thrived and had energy like never experienced before. Three years ago, when she was 11 years old, she decided to go back to drinking this formula so she could have her feeding tube removed. Now, at 14 years old, due to her current medication and therapy regime, she has increased her food intake enough that she doesn’t need her formula anymore although unfortunately she isn’t totally out of the woods with her nutrition intake and we must ensure she maintains her weight as she recently started a vegan diet.
Bella was diagnosed with EoE in 2005, and in 2009, after years of feeling isolated and frustrated by the lack of information and support available in Australia for those with EGIDs, I founded ausEE Inc. which is an Australian charity dedicated to improving lives affected by eosinophilic disorders. Fast forward to 2018 and we are now supporting over 1,200 people living with EGIDs and provide resources to the medical community as well. You can find out more about ausEE and eosinophilic gastrointestinal disorders at www.ausee.org
Sarah (Bella’s Mum)