This story was sparked by Dynamo. Yes, the magician. He recently shared a set of selfies with a bloated face that was caused by medication he’s taking to fight Crohn’s Disease symptoms. To my surprise the media collectively jumped on it because all of a sudden this disease became ‘visible’, which is exactly what the problem with Crohn’s Disease is. The symptoms of Crohn’s Disease are so hidden and unknown, and therefore it’s one of the most stigmatised diseases out there. I’m ready to help break this stigma and on top of that contribute to a solution that will help the millions living with this chronic disease.
First let me take a step back. This is my coming out if you will. For years I have been silent about living with Crohn’s Disease because I knew that people would not understand. They would not see it. In my professional life people would judge it, would deny me jobs because of it. But now I will speak out.
I was diagnosed with Crohn’s Disease as a teenager, like most patients are. I can remember the day very clearly because it was the day before I was supposed to go on my first holiday with friends, and without my parents. My bags were already packed and suddenly I was in the hospital with tubes in my nose, losing one kilogram everyday, being prepared for surgery…. They told me it was Crohn’s Disease. I had no idea what it was, but did not speak out. I went on with my life trying to ignore the impact this was all having.
My most pressing symptoms are the instant need for a toilet and extreme fatigue. And still it’s not too hard for me to hide these symptoms. But imagine looking for the nearest toilet in every place you go, every single day. Or waking up feeling like you already worked for eight hours, before actually going to work. It’s a disease that puts a lot of pressure on a patient.
Everything had changed
After acting like nothing had changed for a few years, I had to come clean and realise that it had changed my life completely. It changed my behaviour. It changed how I trusted my own body. How I looked at others, as you never know what they have to deal with. And I realised I had to actively start working on making my life a little better.
Surprisingly, the solution turned out to be a chatbot. For those unfamiliar, a chatbot is basically a conversational robot. You have probably seen them on Facebook Messenger for example – helping you to book a restaurant or find the right clothing size.
There is a lot that impacts this disease. From stress levels to exercising. Tens of food ingredients increase symptoms, and they also differ by person. Hydration, medication adherence, and many more things….
So I started to work on ideas that could help me. There were no apps out there that could really help. And doctors don’t have time for it next to a 15-minute appointment twice a year. With so many factors to consider and the personal nature of the symptoms, I finally started building a chatbot named Nori. To help me identify and change what was making me sick through regular conversations with this digital coach.
It helped me to make small changes to my lifestyle every day. It taught me which ingredients to avoid and how hydration and medication adherence have such a big impact. Most importantly, it helped me to create a better quality of life and to be completely open about living with this condition.
Chatbot coach for all Crohn’s patients
Eventually, this turned into a company. Last year I founded Nori Health and this chatbot coach is becoming available soon for everyone, thanks to the support of the European Union’s innovation program and many others standing behind our mission.
We want you to help yourself become as healthy and energetic as you possibly can be. And to come clean and speak out about how living with this disease is difficult, but also manageable if it’s out in the open. Because we might not all have the impact that Dynamo has with a single tweet, but if we all come together we have a very loud voice.
To find out more about Nori Health, click here
This story was originally published on Huffington Post.