Josh Hamilton, Fibrodysplasia Ossificans Progressiva Client Lead, explores how the FOP experience drives a deeper understanding of the person behind the condition
Joining the A Life in a Day creative team at the start of 2022, for my first project I was tasked with building a program based around a disease called FOP or Fibrodysplasia Ossificans Progressiva.
FOP is one of the rarest, most disabling genetic conditions known to medicine and is believed to affect as few as 1 to 2 in every million people worldwide. It causes bone to form in muscles, tendons, ligaments and other connective tissues. This progressively restricts a patient’s movement and causes parts of your body to become permanently “locked” in place. There are no other known examples in medicine of one normal organ system turning into another.
The ALIAD (A Life In A Day) programmes are about truly getting inside the mind of a patient and thus our process is heavily focused around the patients. Prior to beginning this role my career had been in journalism; I’d had the opportunity to interview people going through some horrific situations and discussed some dark and uncomfortable topics. However, nothing had quite prepared me for the conversations I have had with patients living with FOP.
Thank you it was a truly enlightening and moving experience. I want to be sure we are creating tools and materials that are easy to handle and understand
The first interview I conducted in this role was speaking to a woman named Carli, who is around my age (in her mid-20s), where she described how she is almost unable to stand up without assistance, how she lives her life with the knowledge that she is becoming less and less mobile and how she has learned to grieve for the parts of her body that she no longer has the use of.
One young women I spoke to was also even unable to turn herself over in bed and was not able to sit in a wheelchair or stand up straight as a result of the way her spine had fused in place; another fell out of her chair in a car park and lay their crying on the ground as people walked past. She eventually pulled herself back into the chair, but the situation must have been truly horrifying.
One of the men I spoke to required the assistance of two carers to carry out even the most basic everyday tasks like getting into bed or taking a shower. I’ve never been one to get emotional, especially when interviewing people as a professional, but some of the stories I heard during the course of the interviews were so emotionally impactful I found myself close to tears on more than one occasion. My boss described the first interview as one of the most difficult he had ever been a part of.
So why am I telling you all this? There’s plenty of tragedy in the world and there has been plenty written about FOP and how awful it must be to live with this condition or with many other debilitating and chronic diseases. I am writing this article because I was so struck by the attitude of the patients that we spoke to.
Despite the debilitating nature of the condition, it’s unpredictability, and, for some, the crippling loss of independence, they remained remarkably positive. Rather than allow the hand that fate had dealt them to ruin their lives or make them miserable, they have refused to allowed FOP to define them or prevent them from living as full a life as they can.
As professionals in the pharmaceutical of healthcare sector, it is easy to focus on the treatment and not the individual. A recent report following a collaboration between the British Oncology Pharmacy Association (BOPA) and UK Oncology Nursing Society (UKONS) has highlighted the impact the A Life in a Day experience can have on creating empathy, leading to better patient-driven outcomes.
It has been a truly humbling and inspiring program to be a part of creating. To speak to people who have truly faced adversity in their life (rather than the petty annoyances that most of us face day-to-day) and have chosen positivity instead of tragedy has been an experience I will never forget.
Get in touch to learn more about this or any of our other experiences.