Coming together for Elaine
Donation protected
Coming Together for Elaine.
Elaine is my youngest sister and she suffers from Ehlers-Danlos Syndrome (EDS), a connective tissue disorder. Although Elaine was always flexible, bruised easily, and had unusual scarring from minor incidents, it wasn't until 2012 that she discovered why. The pain from a water skiing accident in 1995 steadily increased and by the year 2009, Elaine lay tormented by excruciating back spasms that lasted for hours. After years of searching for answers, Elaine herself thought that perhaps she had Ehlers-Danlos Syndrome. This was confirmed by 2 different Geneticists. And, now, she is scheduled for urgent and costly surgery in the U.S. as no Canadian doctors specialize in this disease. This could likely be the first of 3 surgeries she needs. If you are able, please help Elaine in her effort to regain some quality of life.
Our cousin wrote the following beautiful piece to help others understand Elaine's life with EDS.
Elaine's story
by Alena Vincent
Many of us take for granted the things our bodies can do. The human body is an amazing thing. We can train to run marathons, lift large amounts of weight, play sports for hours, and jump, to sometimes, unbelievable heights, but what happens when the glue that holds that amazing body together fails? When, although on the surface, you look normal, inside your body’s structure is slowly giving way? This is essentially what EDS does to the human body.
Ehlers Danlos Syndrome (EDS) is a genetic condition caused by a defect in collagen, the connective tissue that is, in a nutshell, the glue that holds us all together. This defect affects the strength of skin, joints, muscles, ligaments, blood vessels and visceral organs. Instead of a firm structure EDS results in more elasticity. This lack of structure leads to these vital components of the human body having the ability to hyper extend beyond their safe limits. For some that suffer from this condition, the affects are mild, causing only minor discomfort; others are left with chronic pain, and some, unfortunately, are left with their lives at risk. Even worse, because of its rareness, patients with this syndrome often go misdiagnosed for years, and when they do reach the diagnosis, specialized treatment is hard to find.
This is the condition my cousin Elaine deals with every day.
Elaine was once an active, independent, and healthy young woman. She was an avid runner, a fitness and outdoor enthusiast, was physically fit, and was an outstanding teacher. In 1995, when she was only in her mid-twenties, she injured her back water skiing, but the injury never seemed to heal and her pain increased as the time went on. For years, Elaine felt it was solely this old injury coming back to haunt her, but in 2008 the pain became debilitating and it was becoming clear that something simply wasn’t right. I remember, during one family get together, watching my incredibly strong cousin sit through what must have been horrendous pain. Her hands were shaking, she held her body in what looked to me to be an uncomfortable position, and on her face, a smile. I felt helpless. We all wanted to help her, to make her suffering stop.
In 2009, Elaine’s condition continued to worsen. She went on disability from her teaching job and made her first trip to the United States to see a pain specialist. Despite her pain, she managed to fight and go back to teaching for 18 months. In 2012, it became clear she could no longer work; she went on long -term disability.
In the end, after seeing more than 15 doctors, it was actually Elaine herself who determined what mystery ailment was causing her so much suffering. She did research on her symptoms and found that they aligned with those described with EDS. After asking her general practitioner to refer her to a geneticist, she received the final confirmation that she had the genetic anomalies responsible for Ehlers Danlos Syndrome.
Finally having confirmation of her condition has helped Elaine in some ways, but she still must endure daily battles with pain. Everyday actions, we all take for granted, like going to meet a friend for coffee, making your own meal, or even taking a shower are extremely difficult for her. Now living with her family, she must spend at least 23 hours horizontal. As a result of the deterioration of collagen in her vertebrae, her neck can no longer properly support her head. This has residual affects on her spinal cord and has lead to many pinched nerves. If she does choose to go out, she must heavily medicate herself with painkillers, and often, this isn’t even enough to mask her pain.
Between 2009 and today, Elaine has made numerous trips to America for treatments from three different pain specialists, and one neurosurgeon. These trips and treatments have reduced what she refers to as "soul sucking" pain, and have cost her somewhere in the vicinity of $75,000-$100,000.
Now, with her diagnosis in hand, she has seen specialists in America who focus on the treatment of EDS sufferers. There is some hope: a surgery that will fuse her C5-C7 vertebrae. This will help stabilize her neck so that she can be upright and will reduce the awful pain she feels in her neck, arms, shoulders, and upper back. Unfortunately, Alberta Health will not cover the cost of this highly expensive, and, for Elaine, highly necessary, procedure. With no specialists in Canada, Elaine’s hands are tied. She has chosen to go ahead with the surgery on October 6, 2015.
Me, my family, and all who love Elaine want to help her in getting this surgery. Her body already struggles with carrying its own burden, giving her a financial burden as well just does not seem right or fair. Please help by making up for the short -comings of our health care system and donate, even a small sum, towards her surgery.
Elaine is one of the kindest and strongest people that I know. Our family is so blessed to have her. Despite all her own sufferings, she still manages to give hugs, organize family celebrations from her laptop in bed, and hold a brand new family member. She shows care and understanding to all her loved ones, even though many of us cannot even begin to understand the trials she must endure everyday. She is remarkable, beautiful, and an inspiration of the strength and love of the human spirit.
For all these reasons, I propose we come together for Elaine. Let’s stand as one to support her, when her body cannot do it for her.
Elaine is my youngest sister and she suffers from Ehlers-Danlos Syndrome (EDS), a connective tissue disorder. Although Elaine was always flexible, bruised easily, and had unusual scarring from minor incidents, it wasn't until 2012 that she discovered why. The pain from a water skiing accident in 1995 steadily increased and by the year 2009, Elaine lay tormented by excruciating back spasms that lasted for hours. After years of searching for answers, Elaine herself thought that perhaps she had Ehlers-Danlos Syndrome. This was confirmed by 2 different Geneticists. And, now, she is scheduled for urgent and costly surgery in the U.S. as no Canadian doctors specialize in this disease. This could likely be the first of 3 surgeries she needs. If you are able, please help Elaine in her effort to regain some quality of life.
Our cousin wrote the following beautiful piece to help others understand Elaine's life with EDS.
Elaine's story
by Alena Vincent
Many of us take for granted the things our bodies can do. The human body is an amazing thing. We can train to run marathons, lift large amounts of weight, play sports for hours, and jump, to sometimes, unbelievable heights, but what happens when the glue that holds that amazing body together fails? When, although on the surface, you look normal, inside your body’s structure is slowly giving way? This is essentially what EDS does to the human body.
Ehlers Danlos Syndrome (EDS) is a genetic condition caused by a defect in collagen, the connective tissue that is, in a nutshell, the glue that holds us all together. This defect affects the strength of skin, joints, muscles, ligaments, blood vessels and visceral organs. Instead of a firm structure EDS results in more elasticity. This lack of structure leads to these vital components of the human body having the ability to hyper extend beyond their safe limits. For some that suffer from this condition, the affects are mild, causing only minor discomfort; others are left with chronic pain, and some, unfortunately, are left with their lives at risk. Even worse, because of its rareness, patients with this syndrome often go misdiagnosed for years, and when they do reach the diagnosis, specialized treatment is hard to find.
This is the condition my cousin Elaine deals with every day.
Elaine was once an active, independent, and healthy young woman. She was an avid runner, a fitness and outdoor enthusiast, was physically fit, and was an outstanding teacher. In 1995, when she was only in her mid-twenties, she injured her back water skiing, but the injury never seemed to heal and her pain increased as the time went on. For years, Elaine felt it was solely this old injury coming back to haunt her, but in 2008 the pain became debilitating and it was becoming clear that something simply wasn’t right. I remember, during one family get together, watching my incredibly strong cousin sit through what must have been horrendous pain. Her hands were shaking, she held her body in what looked to me to be an uncomfortable position, and on her face, a smile. I felt helpless. We all wanted to help her, to make her suffering stop.
In 2009, Elaine’s condition continued to worsen. She went on disability from her teaching job and made her first trip to the United States to see a pain specialist. Despite her pain, she managed to fight and go back to teaching for 18 months. In 2012, it became clear she could no longer work; she went on long -term disability.
In the end, after seeing more than 15 doctors, it was actually Elaine herself who determined what mystery ailment was causing her so much suffering. She did research on her symptoms and found that they aligned with those described with EDS. After asking her general practitioner to refer her to a geneticist, she received the final confirmation that she had the genetic anomalies responsible for Ehlers Danlos Syndrome.
Finally having confirmation of her condition has helped Elaine in some ways, but she still must endure daily battles with pain. Everyday actions, we all take for granted, like going to meet a friend for coffee, making your own meal, or even taking a shower are extremely difficult for her. Now living with her family, she must spend at least 23 hours horizontal. As a result of the deterioration of collagen in her vertebrae, her neck can no longer properly support her head. This has residual affects on her spinal cord and has lead to many pinched nerves. If she does choose to go out, she must heavily medicate herself with painkillers, and often, this isn’t even enough to mask her pain.
Between 2009 and today, Elaine has made numerous trips to America for treatments from three different pain specialists, and one neurosurgeon. These trips and treatments have reduced what she refers to as "soul sucking" pain, and have cost her somewhere in the vicinity of $75,000-$100,000.
Now, with her diagnosis in hand, she has seen specialists in America who focus on the treatment of EDS sufferers. There is some hope: a surgery that will fuse her C5-C7 vertebrae. This will help stabilize her neck so that she can be upright and will reduce the awful pain she feels in her neck, arms, shoulders, and upper back. Unfortunately, Alberta Health will not cover the cost of this highly expensive, and, for Elaine, highly necessary, procedure. With no specialists in Canada, Elaine’s hands are tied. She has chosen to go ahead with the surgery on October 6, 2015.
Me, my family, and all who love Elaine want to help her in getting this surgery. Her body already struggles with carrying its own burden, giving her a financial burden as well just does not seem right or fair. Please help by making up for the short -comings of our health care system and donate, even a small sum, towards her surgery.
Elaine is one of the kindest and strongest people that I know. Our family is so blessed to have her. Despite all her own sufferings, she still manages to give hugs, organize family celebrations from her laptop in bed, and hold a brand new family member. She shows care and understanding to all her loved ones, even though many of us cannot even begin to understand the trials she must endure everyday. She is remarkable, beautiful, and an inspiration of the strength and love of the human spirit.
For all these reasons, I propose we come together for Elaine. Let’s stand as one to support her, when her body cannot do it for her.
Organizer
Ann Gish
Organizer
Grande Prairie, AB