Meet Jake, a steadfast member of our community. His journey with Eosinophilic Associated Diseases (EADs), which begins at three months old, inspires many. Amanda spoke to Jake about his journey, and you can listen to their conversation in the video below.

Jake was born with severe asthma, leading to countless hospital visits, high-dependency units, and intensive care. Despite every medication available to the doctors and parents, the inflammation within his body remained relentless. The only route for Jake was through research and studies along with Asthma UK and all the pharmaceutical companies.

Apart from his battle with asthma, Jake also suffered from gastro problems, including constant vomiting, diarrhoea and difficulty eating. His gastro symptoms were not getting much attention, resulting in losing a stone yearly, despite eating lots of food. Unfortunately at this time, Jake was unaware of the importance of tracking these symptoms.

I knew nothing about it before; I knew nothing about eosinophils, so with the information that's on your website it gave me so much more knowledge and ammunition to learn about it. I started diving down deeper into my medical files as well as looking online. And going researching up and talking to health professionals.

An Elimination Diet at five years old didn't provide the expected relief. The doctors decided to focus on managing his symptoms with steroid therapy and antibiotics. This decision shaped the course of his treatments for a long time.

Jake has fourteen diagnoses on his medical records, under an overall diagnosis of Hypereosinophilic Syndrome (HES). His medical team broke those down into severe eosinophilic esophagitis, atopic dermatitis, and hyperammonemia. Some diagnoses are still under investigation, like his lower gut, which is tricky as it has no consensus in the medical community yet.

Jake was diagnosed with immediate environmental allergies, including grass, pollen, and mould. A dairy allergy was recently discovered, adding to his growing list of health challenges. 

Despite being in and out of hospitals for more than 20 years, Jake only recently reached the point of care when he was seen as a whole.
After contacting EOS Network for help he was able to use the information and support he received to communicate his undiagnosed gastro symptoms with his doctors, prompting investigations for diagnosis and further treatments.

The impact you've had was amazing. My journey started when we looked into my files with you guys. You helped me get the information that I needed to take to my doctors and say: look there's the medication's out there, like Jorveza.
And within two weeks of having my gastroscopy and seeing my consultant I was given Jorveza and that's all done thanks to EOS Network.

The new holistic approach has made a massive positive impact on his journey and the quality of his life.

He started nutritional drinks along with biologics. As a result, he finally gained some muscles and started feeling a bit normal, leaving his bed and going out.

Without EOS Network, I probably won't be where I am at this stage with my medical treatment and my life now as it is now. I'd probably still be in the same situation as I was before.

Learn more about EoE

Link to UK EoE guidelines

Share your Eosinophilic voice

Donate Support EOS Network Charity