Motivations – Maureen


Medical research on a rare disease that Maureen was diagnosed with as a child, was sorely lacking


So my interest in patient engagement research comes from my own story. I was diagnosed with a rare disease when I was eight years old after four years of searching for answers, and I became involved with the first longitudinal study in my disease, so I was at the [name] for 10 years for very strict research protocol and then after that became – also was engaged in research for a number of years after that on different projects.

So for me medical research is very important, it’s what saved my life, it’s what gives me – the results of it give me a quality of life that I really enjoy, and I have a lot of faith in medical research and in rare diseases, it’s something that’s very, very difficult so there’s a lot less research. So for 20 years there was no research in my condition. Once I reached adulthood the research stopped, and my health deteriorated tremendously, I was using a walker, I was pretty well house-bound. And just had a horrible life, and there was just no research being done, so a very ultra-rare disease and calling all over and there was no Internet then, trying to find researchers who would take it upon themselves to study what was happening to the kids that they had so well studied in childhood. 

More from:

More content