From patient to medtech innovator
Tim Buckinx was just a teenager when he was diagnosed with a rare blood disorder that changed the trajectory of his life. Now he’s on a mission to help other people with a medical condition to live their best life possible.
“It started when I was 14 years old. I came home from a sports camp with symptoms of meningitis, which included feeling very tired and having neck stiffness,” Tim tells This Is MedTech. “My parents took me to the GP, who immediately sent me for blood tests.”
A lot of people don’t realise it, but a simple blood test involves potentially life-saving medical technology. In Tim’s case, after his blood was drawn, a device called an automated haematology analyser was used to rapidly examine the sample. It revealed that Tim had low red and white blood cell counts, as well as low platelets that prevent bleeding.
This, as well as other tests such as a lumbar puncture, which involved extracting and analysing Tim’s cerebrospinal fluid, ruled out meningitis. “I spent some months without a diagnosis, until one PhD student started looking into it and discovered that I had a very rare blood disorder called Evans Syndrome,” explains Tim. “Only about one in a million people have it.”
It meant his immune system was destroying his body’s blood cells and platelets. This caused weakness and fatigue, nose bleeds, bruising and purpura (purple spots and patches on the skin). He had to stop sports and be very careful about physical injury – a knock to his head could cause a deadly brain bleed.
Once he had a diagnosis, Tim was able to get the medications he needed and he’s truly grateful for this. However, it hasn’t been an easy journey. “At one point, I had to take a medication intravenously every night for about two months. I would sleep at the hospital for treatment, get up in the morning, go home and have breakfast with my family, then go to work,” he says.
Living with these life-long challenges, as well as having a son with a rare form of epilepsy, motivated Tim to start a digital health company that aims to get innovative medtech and treatments into the hands of the patients that need them – without disrupting the daily life of the person with the condition or their family.
What would be a great step forward in terms of living with his blood condition?
“I know that I need to check my blood levels regularly at the hospital if I see certain signs, like purpura or bruising. But that means taking a half day off work, spending most of that time in a waiting room,” he comments. “From my experience in the digital health space, I know the technology exists to do such testing in the comfort of your own home, when you feel it is needed. It’s just a matter of getting it to the people who need it.”
Despite everything Tim has been through and the challenges he still faces, he feels lucky and says every day is a gift.
