My life with EoE

As I write now, I am 53 years old, married with a son, a daughter, and three grandsons.

My name is Stella. I am a qualified chef who happens to have food allergies, and a chronic condition called Eosinophilic Oesophagitis, shortened to EoE, which is also triggered by food and, in some cases, environmental triggers such as perfumes and air sprays.

It wasn't until September 2016 that I got a diagnosis, at the age of 50, and after many years of arguing with Doctors, hospital consultants, and my family, and moving across the country.


What is EoE?

EoE is a rare condition where the white blood cells known as Eosinophils, mistakenly attack the oesophagus when certain foods are eaten. Now, don't think that eosinophils are bad, they are actually a valuable part of the immune system, their job is to protect us from parasites and infections. Eosinophils are produced in the bone marrow, and are normally found in the blood, and in the lining of the gut, they are also associated with allergies. When they get out of control in the oesophagus, they can cause swelling, soreness, pain, difficulty swallowing, and damage, which may lead to being unable to eat any solid food and having to rely on tube feeding. Many people who have this condition have been suffering for years without real help or diagnosis. EoE is often mistaken for, and treated as heartburn, or acid reflux, the patient will be prescribed medication to reduce the amount of acid produced in the stomach. The symptoms are very similar, however, EoE does not always respond to this type of treatment, and other methods must be used. EoE is indiscriminate, and can affect all ages, races, and genders, however, current statistics show that those most commonly affected are white males between the age of 30 and 50 years. There are many symptoms of EoE, including food refusal and failure to grow in young children, vomiting, chest pain, stomach pain, difficulty swallowing (dysphagia), and food impaction in the gullet.



Eosinophils can only be seen under a microscope, but the damage they can cause by being in the wrong place can make life very painful and difficult for sufferers.

Getting a diagnosis

Due to the fact that EoE is a rare condition and has only been classified since the 1990s, there are still a lot of doctors who haven't heard of it. This means that sufferers have to keep going back, and pushing for tests. EoE can only be confirmed by endoscopy and biopsies, because eosinophils are not visible to the naked eye.




Treatment

The majority of patients will be prescribed medication such as Omeprazole or Lansopazole to reduce the amount of acid produced in the stomach. Steroids such as Fluticasone may be used in the form of an inhaler such as is used by asthma sufferers, but the 'puff' is not inhaled, rather swallowed to coat the oesophagus and reduce the inflammation and number of eosinophils. There is also Budesonide, a steroid which is mixed into a 'slurry' and swallowed, with the same effect as the inhaler. More recently licenced in the UK, is Jorveza, which is a tablet form of Budesonide, for adults to dissolve in the mouth, which has shown favourable results in trials, though we may have to wait some time to know more about it's long term efficacy. From my understanding, Jorveza can only be prescribed for 6 weeks, then perhaps for further 6 weeks, we will not know yet how long symptoms will be kept at bay, or whether patients will be able to consume a normal diet.


Where did my journey begin?

I was born at home, the youngest of 5 girls, at 11:15 on 17th May. All my sisters were either at school or work, as there are 17 years between youngest and eldest. very soon after my arrival, I was taken by ambulance, in an incubator, to hospital because I couldn't feed. I don't know what happened to me there, no-one can find any of my medical records from before 1982! So, I have to rely on my sister to fill in the information. I am told that I was unable to feed, and that I was in hospital for 10 days. My mother had to stay at home, and I was visited by my sister, who brought milk that Mum had expressed. Bear in mind this was 1966, so refrigeration wasn't as it is now, and it was an hour's journey to the hospital, so who knows if I ever actually had my mother's milk.


Next time: Childhood with eating problems


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