By Ms Emily Galea: I started Medical Sphere to support communication gap between medical experts, their patients, and their families. One of the most powerful stories I have heard about the impact of communication on patient care was told to me by Mr Boris Struk (someone I work with and immensely admire), and I asked him to write it here:
Boris’s story
My son Ryan was diagnosed with Duchenne Muscular Dystrophy in October 1983. I remember the neurologist’s words: “Mr Struk, go home, enjoy Ryan he’ll be dead by the time he’s fourteen or fifteen.”. Ryan was three years old.
Those sixteen words from that neurologist changed our lives, and as it turned out, the lives of many others. This was pre-internet days and my encyclopaedia had three short lines that shed light on the diagnosis: “Duchenne Muscular Dystrophy is a devastating muscle wasting disorder affecting boys who seldom survive beyond fifteen”. That was the sum total of information available to both patients and parents. The first six months passed with a blur. I was not able to reconcile in my mind that our beautiful son Ryan, was doomed before his life really started. In my experience, Ryan’s treating neurologist was not particularly helpful nor forthcoming with detailed information. I figured it was up to me.
First, we needed funding. I wrote a personalised letter to every state member of Parliament explaining the disease that was going to take my son’s life and the need for their financial support for vital research. Responses I received were disappointing. Some replies sympathised with the situation and made small personal donations to the cause. I moved on to Plan B to secure funding: build a media profile for MD.
I secured the support of a prominent TV figure and American actor, wrote a script overnight, and we filmed an ad at the Nine Network Studios outlining the progressive and devastating nature of MD and calling for donations. We received a small amount of money from viewers, but several weeks later a watershed moment happened: a single donation of $50,000 was made (about $150,000 in today’s money). Through this donation and working with Monash University we were able to establish a new charity: Muscular Dystrophy Australia (MDA).
A key pillar of our work in establishing MDA was to increase information and awareness of the disease and its affects. I wanted patients and families to have easy access to credible information, something I had lacked when I received Ryan’s diagnosis. I had worked in marketing and was a techno-junkie, so I personally built the first website in the world dedicated to muscular dystrophy. “The Home of MDA” grew rapidly and within a period had attracted more than 20 million visitors. The reason was simple: we had all our information translated into 17 different languages and could serve information to patients and families around the globe. MDA funded post-doctoral fellows to bring “new blood” to enter this area of research. We created CampMDA (a weeklong camp) for children with DMD and providing respite for their families, bringing on average 40 children together to share their experience and connect them with volunteer nurses, physios, and occupational therapy students. CampMDA provided the moments of our greatest impact. But it was all possible because we had found a way to communicate with the public, and between patients, about the scourge of muscular dystrophy and what could be done about it.
By 1987 research had progressed to the point where it could isolate the gene that caused DMD. It meant diagnosis could be made faster, it also got us excited about finding a potential cure. The media was hyping this possibility.
But good communications between patients, their families, and their doctors are critical to determining where medical research efforts should be focused. It is not just about the research that experts want or need to do. It is pivotal to build rapport between “lay” people including patients and their families and scientists to drive research outcomes. To put a human face on what is being sought after in the research lab.
For Ryan, it was likely that we could not find a cure within his lifetime. One night, after I came home from working long hours on MDA, I had a pivotal conversation with Ryan. He chastised me for spending so many hours trying to find an elusive cure. By this time Ryan was very much physically compromised. He said to me “Dad, I’m happy with who I am and don’t want to walk again. This is me.”
I asked him if scientists could offer an immediate solution for him, what would it look like? He had a shed he spent time in and computers were his passion. “Dad, I just want enough strength in my hand to drive a computer mouse, change a floppy disc, or scratch my nose.”
I relayed this conversation to an eminent Canadian neurologist, and he embraced it. The neurologist told the story at a convention to more than 2,000 scientists, arguing that Ryan’s suggestion was right: “We are looking at this as a systemic solution. We need to rethink our strategy and look at specific isolated muscles as suggested by Ryan”. We were so busy searching for a cure, we had forgotten to put meeting the patients’ needs at the heart of our efforts.
Ryan lost his lifelong battle with DMD on 9th October 2020 at the age of 40. He had outlived the neurologist’s fateful prediction by a quarter of a century. Through our efforts, through building better communications between medical researchers and patients and families, we had built a global community committed to making a difference in the fight against MD. Whether that be finding a cure, or just finding ways to make the most of time between patients and their families.
Boris M Struk
Founder MDA recently retired, and
Ryan’s Dad