Why I built Celie
Hi, I’m Chloe. I was inspired by my own experience with chronic illness to create Celie, an app in which users can pool their medical data to help and empower each other. This is the story of why I built Celie, and how I’m hoping it will change chronic illness forever.
I got sick in my second year of university back in 2014. I was diagnosed with a rare bowel disorder, medicated and sent on my way, with specialists assuring me I would get better. I did not. Every year another part of me went haywire – my vision, my stomach, my skin, my temperature regulation. I saw tens of specialists, some who helped, others who were kind but stumped, a few who dismissed me as delusional. During this time I managed to complete a PhD in computer science, with a focus on how machine learning can be used to improve medicine.
In 2024 I started having unexplained falls, which marked a turning point in my disease becoming more aggressive. I was fast-tracked through the NHS and finally, after over a decade of illness, given a diagnosis of ‘Complex Connective Tissue Disease with overlapping features of Inflammatory Myositis, Cutaneous Lupus and Antiphospholipid Syndrome as well as significant Autonomic and Gastrointestinal dysfunction’. I’m a lot better with treatment and an awesome medical team, but I still have to work hard to adapt to my disease and the ways it affects me.
Though getting a diagnosis helped dramatically, my health care still has significant gaps. I still receive confusing and conflicting advice on medication timing and side effects. I have symptoms that no one can figure out, so get ping-ponged between teams for months. Just as I did before I was diagnosed, I have to plug these holes using google or trawl depressing forums in search of people with similar experiences. And because I have an overlap syndrome, the chances of getting to be part of medical research are near nonexistent.
So I built the platform I needed: a place for fast, crowdsourced insights regardless of your diagnosis or whether doctors take you seriously. Did this drug cause nausea in others with similar profiles? What dosage and timing minimizes side effects? Do others with my condition share this symptom? Could my symptoms match a different condition altogether? If you have a chronic illness, you’ve likely asked questions like these.
But Celie goes beyond just sharing information. Whenever users add symptoms, diagnoses, or treatment responses to the app, they contribute to a rich dataset representing real, complex bodies that don't fit neat diagnostic boxes. I strongly believe that medicine doesn't yet understand every condition. If doctors have given up on you, I haven’t. And if we can find enough people like you, someone can study it.
If this resonates, I’d love your help shaping Celie. We are recruiting early users to test the app and share feedback. Contact us at hello@celiehealth.com to get involved.