Hemochromatosis Joins Bagpipes on Stage
Posted June 27th, 2018 by Canadian Hemochromatosis Society
Hemochromatosis awareness has broken through to the fringe. The Toronto Fringe Festival, that is. Hemochromatosis has a role in Robert, a comedy written and co-directed by award winning playwright Briana Brown, a 2014 Masters graduate in Creative Writing at the University of British Columbia.
“Kat and James are waiting for their father to die. Not exactly estranged, but certainly not close, the two struggle to make conversation until James reveals the worst secret he possibly could. Robert is a witty and graceful new comedy that delivers laughs and heart while taking on difficult questions of identity, grief and loss. With a set of bagpipes.”
A key plot point of the story is the father’s genetic condition, and Briana’s Scottish background provided the springboard for the story’s heritage component highlighted by plaid, bagpipes and Celtic genes. As she wrote the story, Briana realized she needed to name the hereditary condition that causes the demise of the father. She searched for something that was known for its difficulty to be recognized by doctors and commonly mistaken for other medical issues. After a month of what Briana describes as “dating” a few different genetic conditions, she landed on the perfect fit: hereditary hemochromatosis.
“It was by chance, and slightly eerie how perfectly it worked within the context of what I’d already written,” said Briana.
Hereditary hemochromatosis is a disorder most commonly seen in persons of Celtic and Northern European heritage. Globally, the incidence of the disorder is highest in Ireland (UK) and Brittany (France). In Canada, the incidence in the general population is approximately one in 300.
Hemochromatosis is a genetic metabolic disorder that causes the body to retain and store excessive amounts of iron. Left untreated, the iron builds up in in tissues and organs where it can cause a number of debilitating and potentially fatal complications and diseases.
Because early symptoms can be non-specific and attributed to many other causes, hemochromatosis can be difficult to diagnose until more extensive damage has occurred. Even then, hemochromatosis is often overlooked as the root cause in a disease.
Early symptoms can include fatigue, joint pain and impotence in men or menstrual irregularities in women. Later complications can include type II diabetes, heart disease, thyroid issues and cirrhosis. Diagnosing the disorder early is the key to preventing complications. Treatment involves the drawing off of blood, similar to a blood donation but on a more frequent basis.
Briana joined several Facebook hemochromatosis groups to learn the medical terminology and casual ways people talk about the disorder. She worked with Janelle Hanna and Chris Baker, the two actors who portray the siblings, helping them to wrap their heads around the different combinations of genetic inheritance of the disorder. Prioritizing accuracy and respectfulness to hemochromatosis sufferers and their families, Briana has high hopes that she has been successful, but confided that she would love someone to approach her after watching the play to let her know if she was off base.
When asked if during her research for the play she worried that she would potentially find something that would expose her own genetic risk for a fatal condition, Briana replied with an emphatic “Yes!” Now that she is aware of hemochromatosis and how it can affect those with a northern European background, she keeps an eye out for the warning signs in her own family.
A brief description of hemochromatosis with a link to the Canadian Hemochromatosis Society’s website www.toomuchiron.ca is included in the show’s program. Robert will certainly help raise the profile of this under-diagnosed disorder. “It is such a common condition yet so under-recognized. I was fascinated to discover what a mission is currently underway to promote awareness, particularly through the governments of key countries where people are most at risk. It’s hard to believe something so prevalent can still be so unknown.”
Receiving its world premiere at the Toronto Fringe Festival, Robert is playing on site July 4th – 14th at St. George the Martyr, 197 John Street, Toronto, Ontario. Tickets are available at fringetoronto.com.