Can a book be life-changing? I believe that it can.
Back during my days as a struggling makeup artist, Shakti Gawain's Creative Visualization taught me that the first step to having success is imagining what that could actually look like.
As a high school dropout with low self-esteem, I didn't have much in my own experience to draw from. But then I came up with a practice that I called "reading from my own success story." Anytime there were disappointments or setbacks, I would imagine reading about where I would be once the hurdles were behind me. I even used to see myself sitting down with Oprah talking about the challenges after I'd attained my dreams of becoming a top Hollywood makeup artist and cosmetics entrepreneur.
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A decade later my Cinderella story had made me a pioneer of infomercial marketing with my own line of makeup that would go on to earn over half billion dollars. Incredibly, a call came in one day with an invitation for me to fly to Chicago and appear on Oprah!
Sadly, because of my acute fear of flying, I didn't accept. Eventually, I ?read? my own success story for being able to fly and was able to share family vacations with my husband and three beloved children.
Up until about five years ago, we were living the dream of happily ever after. Then came the nightmarish day when I first heard the acronym NMO (for neuromyelitis optica, also known as Devic's disease) after my otherwise healthy 14-year-old daughter Ali was given a test to determine the cause of eye pain and blurred vision.
A rare autoimmune disease that was once thought to be a severe variant of multiple sclerosis, NMO is a distinct disorder that can potentially blind, cripple, and in some cases kill those it afflicts. A specialist called to inform me and my husband that our beautiful, brilliant Ali tested positive for this dreaded and little understood disease. Though the attack could leave permanent or temporary damage, the doctor gave Ali four years to live.
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With those unacceptable words, I immediately went into (terror-driven) warrior mode. In going from mascara to medicine, I had to educate myself, but was shocked to find almost nothing available online.
Since her first attack in February of 2008 to the present day, Ali has had 36 doctor visits, 60 sets of lab tests, 32 MRIs, 52 IV treatments and 16 full-blown attacks.? We?ve fine-tuned the right combination of medications (including steroids and immune suppressants), supplements and a gluten-free diet for Ali and she has been in remission now for almost two years.?
After establishing the Guthy-Jackson Charitable Foundation with my husband Bill, we moved at warp speed to create global awareness and fund life-saving research to better understand, treat, and one day cure NMO. Our partners are both leading experts at the top medical institutions in the world and visionaries we asked to begin to imagine what a cure would look like.
The way we have approached Ali?s treatment is the same way our foundation has approached NMO?it is multi-dimensional, and in my opinion, that?s the key to our success.?We are actively working to facilitate an industry-sponsored clinical trial, as well as expanding a talented pool of researchers dedicated to this cause.? ?
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We?hold an annual symposium where researchers from over 12 countries share their findings, we have established the first open-source biorepository and international clinical database for NMO research and we have developed and provided tools and resources to the NMO community to raise awareness, educate, and create support groups locally and globally. ?
Today, miraculously, what was seen as a death sentence for our daughter can be seen as a treatable chronic disease.??Moreover, we have built the largest online resources for NMO educational tools and social networking for patients and advocates and so give hope and solutions to the thousands of other NMO patients who were once left in the dark, or worse, misdiagnosed with MS and potentially on the wrong treatments.
Interestingly enough, Ali used her own form of visualization to defy the odds. In high school, as the captain of her tennis team she led the Buckley School in Sherman Oaks, Calif., to its first ever Women's Tennis CIF championship by imagining the banner hanging in the gym. In the process, she became the first tennis player at Buckley to have her retired jersey hang there too.
Now as a college sophomore making straight As and winning top offices in student government?not to mention being a patient advocate?she is unstoppable. Ali has said that even though she never wanted to be a poster child for this disease, if speaking out on the need for testing and awareness can save lives, then she is honored to play that role.
In writing Saving Each Other: A Mother-Daughter Love Story, Ali and I really hope that our book can change and save lives. Whether it's NMO, another rare disease or mystery illness, whether you are a patient, parent, or physician, don't be afraid to imagine yourself reading the success story that has yet to be written.
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Victoria Jackson is co-author, with daughter Ali Guthy, of Saving Each Other: A Mother-Daughter Love Story and is co-founder of the Guthy-Jackson Charitable Foundation.
Source: http://news.yahoo.com/story-death-sentence-treatable-disease-155532923.html
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