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How this founder’s diagnosis of Ehlers-Danlos inspired launch of her digital health company

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kristy dickinson chronically simple

Health Tech World speaks to Kristy Dickinson, founder of the digital health platform, Chronically Simple, about her diagnosis of Ehlers-Danlos Syndrome and how it inspired her to develop a platform that supports people who are living with a chronic illness

 

At 37, Kristy Dickinson was diagnosed with Ehlers Danlos Syndrome (EDS). The rare genetic disorder weakens connective tissues in the body, the ‘glue’ that holds the body together.

The condition impacts each individual differently. Dickinson experiences the hypermobility and vascular components of the disease, meaning her blood vessels are weakened and her joints are prone to dislocate. Simply rolling over in bed can cause a rib to “pop out”, she says.

Up until her diagnosis, Dickinson, who lives in Canada, experienced a range of unexplained health complications. As a child she wore leg casts to straighten and stabilise her joints.

At 24 years old, she had an intussusception, a condition where one part of the bladder ‘telescopes’ into the other. It is typically seen in infants under the age of three.

‘We don’t see things like this in people your age’ or ‘we don’t understand why this would happen’ were statements that Dickinson would hear frequently throughout her life from doctors who were stumped by her health conditions.

“I didn’t get diagnosed until I was 37, but you’re born with it; it’s a genetic disorder. So that journey to diagnosis was long, but when I got the diagnosis, it really explained all these one-off situations that I had endured growing up,” says Dickinson over Zoom.

In her late 30s, Dickinson was dealing with kidney issues which her doctors, once again, were struggling to get to the bottom of. She decided to take her health into her own hands, visiting a dietician to see if changing what she ate could help.

Luckily, the dietician also worked as a geneticist at a local hospital and had a keen interest in EDS. When Dickinson told her about her symptoms, she was referred to a geneticist and was later diagnosed with the rare condition.

Although genetic testing has improved in recent years, Ehlers Danlos Syndrome continues to go undiagnosed in many patients. There is no cure for the disease and due to the vascular component of the disease, the average life expectancy was in the mid-40s at the time of Dickinson’s diagnosis.

At just 37-years-old with three young children, the diagnosis was “daunting” to hear and changed her entire perspective on life.

“I don’t take things for granted,” Dickinson said. “I became much more intentional and mindful about how I spent my time, what happiness looked like for me and where my priorities were. I think none of us know how long we have on this planet. But when you lose your health, you really have to take stock.

Dickinson was running a successful search firm during the time of her diagnosis. She, unfortunately, had to close the business as she spent the next year focusing on improving her health.

Her healthcare was divided across ten separate specialists across three hospital jurisdictions. In Canada, the hospital system is siloed so communication between different providers can be a difficult task.

Dickinson approached family members and friends with chronic illnesses to find out how they managed. She was surprised to find that most were using files and folders to keep their health information organised.

She searched for a digital solution that could bring all aspects of her healthcare journey into one place, but an app that did this was, as far as she was aware, didn’t exist.

“I struggled as the patient to keep everything together. Oftentimes, the burden falls on the patient to share their history and make sure that you’re providing each healthcare provider with a holistic view of your health so that they can make the right treatment decisions for you.

“I was on different treatments and my cognitive ability was impacted, so I couldn’t remember to take the medication, I couldn’t remember what I wanted to talk to my doctors about and when I went to the app store there were tens of thousands of health and wellness apps out there.

“The idea of downloading a medication tracker and a symptom tracker and a diet tracker, and a documents manager just felt very overwhelming to me. I couldn’t find one centralised hub that had everything.”

These frustrations inspired her to launch a company that could solve hers and her friends and family’s issues.

“I knew that we had a problem. And I knew that I was not alone in in trying to manage this problem. And I couldn’t find anything out there that the patients and the caregivers that I’d spoken with said that they wanted and that I knew I wanted from my personal experience

“In hindsight, I’m very blessed because when one door closed another door opened, and that’s Chronically Simple.”

chronically simple

Chronically simple includes a medication tracker, symptom tracker, appointment tracker, expense tracker and pharmacy matching tool.

Chronically Simple is an app that helps patients and caregivers manage their health, with a built-in medication tracker, symptom tracker, appointment tracker, expense tracker and pharmacy matching tool.

“What we’re built on is empowering patients and caregivers to take an active role in managing their health,” Dickinson said. “We know that engaged patients are healthier and we know that there’s a tremendous burden put on caregivers; caregiver burnout is a very serious issue.

“I thought if we can build a simple, smart and secure solution to help manage all of the appointments, interactions and the administrative burden that accompanies living with an illness or disability that will help patients and caregivers feel empowered and that will lead to better outcomes.”

It has been a “wild ride” since launching in 2017, Dickinson says. The company launched its MVP on the App Store and Google Play in August 2018 and half a year later, it was acquired by AmerisourceBergen. An eight-month development process ensued with a launch date set for March 13, 2020.

Due to the onset of the pandemic, the company changed trajectory, delaying its go to market campaign to support the medically vulnerable during the global health crisis.

Dickinson says: “We very quickly connected with health care providers to ask what [they] needed to know for someone that is presenting at the hospital with COVID symptoms and how we can quickly and efficiently share our complex medical history and ensure that we’re tracking and managing relevant symptoms for this virus.

“We quickly developed a COVID test tracker and we launched our symptom tracker in the spring of 2020.”

The digital health space is becoming increasingly saturated, however Dickinson says the company’s approach and her personal experience as a patient with a chronic health condition sets it apart from its competitors.

“We live in a world where there’s app fatigue,” Dickinson adds. Some of the competitors that I’m seeing are healthcare providers, hospitals or big tech companies that are bringing tools to market, but what makes Chronically Simple different is that we are the end-user.

“Every data point in the tool has been built by a patient or a caregiver’s pain point. If you listen to them, they will tell you what they need.”

Chronically Simple is currently being used across North America, the UK, Australia and New Zealand.

In the next 12 months, Dickinson says the company will be developing its partnership with Apple Health and Google Fit, introducing new languages and investing in growing its 3500-strong user-base.

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