Posted by Daan Hekking on February 05, 2018
When someone thinks about design, most likely this person associates it with the aesthetics of an object. This is not wrong because creating an aesthetically pleasing product, digital or physical, is part of the profession. But it is much more than the looks of a solution for an identified problem. Design has so much potential to strengthen and give power to a group of people and I am making it my mission to maximise this potential, rather than just focusing on the looks of a product. There are a lot of good examples of how ethnographic research, co-creating solutions with patients & experts, following trends, prototyping and iteration based on user testing can create fantastic product solutions. Because of that, I am exploring the benefit of design for paediatric IBD patients, who unfortunately will have a whole life of disease management ahead of them. Currently, I am working on my master thesis in Advanced Product Design at the Umeå Institute of Design in northern Sweden and hope to work together with you!
My name is Daan Hekking, I am 24 years old, born in The Netherlands and was diagnosed with Crohn’s disease when I was 18.
After four surgeries in nine days and roughly seven weeks of hospitalisation, I went home for further rehabilitation. I left the hospital with a fistula between the cecum and my belly surface, which basically had the same function as an ostomy, since the bowel perforation hadn’t closed and healed itself yet. To shorten a long story; the perforation healed by itself, stools were normal again and I was given biologics, with the hope that the fistula would dissolve over time. It saved me from getting an ostomy, undergoing possible other surgeries and suffering more complications. Now I am on Azathioprine, which is highly effective for me. I have never really had major inflammations, neither before, nor after the four surgeries when I was eighteen years old and I have not suffered from major IBD symptoms *knocks on wood*.
Even though I am diagnosed with Crohn’s disease, I can luckily live a life without limitations. I realise I am in a very lucky position here and that is exactly why I find it so important to give something back to the IBD community. Everyone who has been involved in my disease experience, my parents, brother, relatives, gastroenterologist and friends have been so incredibly supportive along the way and I will be forever grateful for this support. I think IBD has changed my character, maybe not directly after my surgeries but definitely the last two years. In the last two years, I have realised how important it is to enjoy and appreciate everything life has to offer you. Right now, I am in remission, feel good about myself, have a great social life, and am in the position of creating solutions for people in need of them.
As I am trying to focus on improving the care for children with IBD, working together in a cross-disciplinary way, is key to success. ImproveCareNow is the embodiment of this mindset and I not only hope to get in touch with people who are part of this community, but I also hope to become part of this organisation and continuously contribute with the skills I have acquired in my life as a designer. I am very lucky Shire is supporting me in this journey with their extensive knowledge and they have already opened many doors for me. Educated as a designer, I tend to identify problem areas in the experience of a chronic disease and simply come up with a solution for an unmet need. But how do I find the unmet needs? By sharing and listening to stories. Being empathetic is key, not only in life but especially as a designer. If you want to make the right decision, you must take everyone’s opinions into account rather than following your own thoughts. With this thesis, I hope to create an open platform for innovation where everyone, no matter their background, can contribute, share ideas and reflect on these ideas. To accomplish this, I will write a series of blog posts on LOOP, where I will share the insights, generated ideas and concepts and ask you to comment on them.
If you have any questions regarding my diagnosis, treatment and lifestyle or would like to share problem areas and your own ideas with me; feel free to send me an email or visit my website.
All the best,
Daan Hekking
MFA Advanced Product Design
Umeå Institute of Design, Sweden
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