Sandra George doesn’t go out much these days, but that hasn’t stopped her from changing the world and embarking on the most important journey of her life.
George suffers from scleroderma, a disorder that decreases the elasticity in connective tissue.
Connective tissue enables heart valves to open and close, the lungs to expand, and the stomach to digest food, among other things. A lack of elasticity makes it difficult and painful for George to move, breathe and eat.
George was diagnosed with scleroderma in 1993. At the time, she was going to college and caring for her five-year-old daughter. When she began to feel tired and her fingers started curling, she knew something was wrong.
“I went to see my doctor and they sent me to a specialist in Victoria who told me what I had. I was in shock. I didn’t know how to deal with it and I didn’t know anyone who had it. I was more worried about my daughter than myself.”
George quit school and joined a group of local women who had formed a support group for those suffering from the disorder. Being involved in that group helped George understand what was happening to her body and what lifestyle changes she would have to make so she could survive.
The average lifespan for a person diagnosed with scleroderma is two years. Nineteen years later, George is defying the odds. But this is a woman who is not unfamiliar with overcoming adversity. She is a residential school survivor who was taken from Duncan Elementary School to Kuper Island when she was in Grade 3 and stayed separated from her family until Grade 7.
During that time, her guardians referred to her only by the number 50. In high school, she participated in competitive canoe pulling, which involved extensive physical conditioning and a special diet. The training required discipline but she enjoyed it.
George has found a way to live well with this disorder even though there were few resources available to help her. She developed a strict diet and, because she has limited mobility, her daughter helps care for her. George recognizes how hard it is for children of scleroderma sufferers.
“It affects the whole family, emotionally and physically, when you have scleroderma. My daughter brings me out shopping and has to carry all of my groceries. She does a lot to keep me comfortable.
Many near her circle are fearful to have a relationship with George, a situation she thinks can be helped with education. Together with Amber Macadam, a Community Health Nurse working for Ts’ewulhtun Health Centre, George wrote a book to explain to sufferers and supporters what scleroderma is all about.
“There are people out there that have scleroderma but they haven’t come out because of fear of people knowing what they have. I feel people don’t really know me. They are scared they might catch it. You can’t catch it. They just don’t want to come near me because of that. I did my story to educate my people.”
George also wrote her story to explain how she is living with this disorder, including what she eats, what she uses for pain relief, and accommodations she has made in her home.
“I had to tell my story of how I live with scleroderma. You can live a healthy life with it. You don’t have to hide.”
Macadam thinks the reason the book is so powerful is because it is written in George’s own words.
“The gift this incredible woman has brought forth is speaking to people from an experienced perspective. Every single word is hers.”
The plain language book is the first piece of literature on scleroderma that represents First Nations culture.
The Arthritis Society and the Scleroderma Society of Canada (SSC) are publishing George’s book on their websites, and helping to print and publish it. The book will be the first booklet distributed across Canada
When the SSC heard about George’s book, they asked her to come as an honoured guest to this year’s SSC Conference in Vancouver on Sept 28
George and Macadam were thrilled by the invitation. SSC representatives recommended the pair connect with medical professionals at the conference to encourage a working group of experts to visit medical practitioners in the Cowichan Valley, as rates of scleroderma are uniquely high in this region but knowledge of the disorder is limited.
Unfortunately, all is not going as planned
“A week ago they called and said they can’t fund the trip,” said Macadam, “But hell or high water we are going.”
The pair is asking the public for donations to help fund the trip, with the hope they can afford for George’s daughter and granddaughter to join them.
“They supported me and brought me to the hospital at three o’clock in the morning. They know what I’m going through. My daughter would learn more about it and understand better.”
It will be an exhausting journey, and having her support network nearby will help George remain calm and rested, something Macadam said is critical to her health.
“Sandra’s immune system is so suppressed if she gets overtired she is more susceptible to picking up any bacteria. It is essential she doesn’t get overtired, anxious or stressed.”
When she returns from the conference, George has ideas about where to put her knowledge and energy.
“I want to help our people with it. I could start a group. You never know what I’ll want to do next.
Visit this link to donate to George’s conference fund, or contact Macadam at 250-746-6184. Sandra George raising awareness and beating the odds
Sandra George, who is trying to raise awareness about scleroderma, has worked closely on her journey with public health nurse Amber Macadam (left).