Meghan Andrews is a Toronto based photographer (she describes her approach to her art as “I live to capture the moment, big or small I love to capture them all.”) For her new project she moved across Canada visiting families where one member has Huntington disease.
The new book is titled “Huntington’s Disease: Trials and Triumphs”. The aim of the book is to document the strength, courage and positivity of 15 families coping with various stages of the disease. To visit the 15 families, Meghan traveled from coast to coast.
As Meghan explains: “I thought that by documenting families with Huntington’s I could bring awareness to the disease and illustrate how the disease affects not only the patient, but the family as a whole.”
Huntington disease is a debilitating brain disorder that is fatal and incurable. The disease is a neurodegenerative genetic disorder. The genetic basis of the condition was discovered as recently as1993 by an international collaborative effort spearheaded by the Hereditary Disease Foundation.
The symptoms commonly include uncontrollable jerking movements and relentless cognitive and emotional impairment. The symptoms are normally manifest between the ages of 30 and 50. From this stage the condition gradually worsens over the 10-25 year course of the disease. Eventually, and sadly, the condition normally leads to total incapacitation and death.
The project has a personal resonance for Meghan. Her late father had Huntington disease (he sadly passed away in 2004.) Two years later, Meghan underwent genetic testing and learned that she also carries the gene.
In summing up her project, Meghan said: “I found this whole experience to be an incredibly healing one. I constantly find myself thinking that if others can do this with a smile on their face, so can I.”
It is estimated that one in every 7,000 Canadians has Huntington disease and around one in every 5,500 is at-risk of developing the disease. One charity exists in Canada to raise awareness and to support families, called the Huntington Society of Canada (HSC).
