There's always hope.
I WAS DIAGNOSED with multiple sclerosis almost 18 years ago on Valentine's eve. At the time, the MS verdict essentially was hopeless. "You'll never walk again," the doctor declared, before adding, "Life as you know it is over.... Just go to bed. You are lucky because you can have people bring you food in bed. You will probably be able to operate a remote control for your TV set."
Stunned by this verdict, I wanted answers. I wanted to know what I could do; what treatments or medicines I could take: what I could read: what specialist I could speak with. "There is nothing," replied the doctor, "absolutely nothing." With a deadpan face, showing no emotion, he offered not even a remote ray of hope--a very bleak diagnosis for a 33-year-old wife and mother of three beautiful, active little boys. Leaving the physician's office, I felt as though I was supposed to accept this dismal prognosis. I felt that I should crawl into bed, never to emerge again, but I was too angry to lie down without a fight.
I began to educate myself. At the time, 1991 to be exact, there was not much known about MS. The doctor had been correct in telling me that there were no therapies or drugs that could help stop the progression of the disease and that there were not any standardized treatments. However, through my insatiable desire for more information, I began to learn the importance of second opinions. I learned that people, three times women than men, usually contract MS when they are in their mid teens. Many believe the autoimmune disease lies dormant until one of three conditions (illness, physical injury, or extreme stress) brings on an MS attack in the person when he or she is between the ages of 20 and 40--in the prime of life.
By becoming proactive and owning my MS, along with integrating positive lifestyle changes such as getting plenty of exercise, eating correctly, taking large quantities of daily vitamins and supplements, avoiding hazardous social and environmental conditions that provoke infection, and creating a routine of daily prayer, I have been able to exceed everyone's expectations. Additionally, by empowering and working to heal myself, I have been inspired to increase the public's overall awareness of MS and those diagnosed with the disease.
From nearly the point of diagnosis, I have transitioned my doctor's desolate prediction into a life force that has worked to raise millions of dollars to fund medical research and start a foundation that has brought together a dream team of neurologists from the best hospitals in the U.S., known as the Center Without Walls; with the goal of working as a team, never duplicating, constantly communicating, and funding important basic science research. As I state in Lean on Me: "I am not disease-free and might never be. I am not a doctor, a medical or psychological authority, or a self-help guru. I am someone who was given a devastating diagnosis and who sought practical ways to overcome my illness and live a full and meaningful life."
As the foundation was approaching its 15th anniversary--our crystal year--several months ago, the mysteries of MS were becoming crystal clear. The Center Without Walls has been working tirelessly to discover new treatments. With six new therapies under the proverbial belt, 2008 brought the latest and greatest breakthrough. The drug rituximab, currently used to treat non-Hodgkin's lymphoma and rheumatoid arthritis, has shown, at least in preliminary tests, that it can fight the most common form of multiple sclerosis: relapsing-remitting MS. By targeting the immune system's B-cells, rather than the traditionally targeted T-cells, the study has provided valuable and promising insight into the actual cause of multiple sclerosis.
"This very promising ... study represents a paradigm shift in our thinking about MS," explains Stephen L. Hauser, the principal investigator and professor and chair of the Department of Neurology at University of California, San Francisco. "It tells us that a type of white blood cell, called B-cells, plays a central role in the triggering of relapses in MS. It also raises great hope that targeting B-cells will represent a new horizon for MS therapy."
After almost 20 years, I can state proudly that the entire landscape for a person being diagnosed with MS has changed. Hopelessness has been vanquished by the fact that there now are choices and options for how to treat people. In the near future, multiple sclerosis should be able to be managed and those living with the disease will be able to realize a healthy future. A young mother walking into a doctor's office does not have to pair a frightening diagnosis with a terrifying lack of information. I am ecstatic at the changes that are taking place in the world of MS and beyond. Dr. Hauser and the team at the Center Without Walls, including Emmanuelle Waubant, proposed this clinical trial based on mounting evidence by UCal-SF scientists and a key selection of other teams, based on the evidence that B-cells play a central role in damaging the myelin sheath, which disrupts the transmission of electrical impulses among nerve cells, in turn damaging neurological function.
This is an amazing breakthrough because, since the 1970s, scientists have focused on the role of T-cells. This discovery has an astonishing impact on the way that researchers, scientists, and the world views MS and treatments geared toward it. This specific trial was focused on patients with relapsing-remitting MS, who typically have acute flareups of inflammation in the myelin sheath that can lead to temporary neurological malfunctions. The problem is that, after the flareup subsides, residual damage oftentimes remains and, through multiple attacks, people with MS have accruing disability.
Participants in the study received an intravenous one-course treatment of rituximab, and then were examined on a regular basis with brain scans and clinical evaluations. After 24 weeks, patients that had received the drug had a 91% reduction in inflammatory lesions and a 58% reduction in the number of relapses, as compared with patients who received a placebo.
In any case, this breakthrough, my health, and my overall outlook and focus are not just about MS and the many changes that have taken place in this specific area of health anymore. My diagnosis has shifted the way I view health care and life. It is necessary to be proactive and never take your health or health care for granted.
Personal Health Record software (PHRs) has been making headlines in today's medical news. They are fast becoming the newest trend with physicians and, with the My Very Necessary Medical I.D. Card and program, people are learning that they have control over their health and health care. Individuals are not helpless; they do not need to be rocket scientists to understand medical conditions, medications. answers, and studies. The I.D. Card offers a safeguard against the approximately 108,000 yearly deaths incurred in the U.S. as a result of preventable medical mistakes--the fifth-leading cause of death in this country. Approximately 93% of those errors could have been avoided if the attending physician had correct medical data about the patient while that individual was being treated. By providing quick and easy access to information that doctors need, this PHR enables patients to take their medical records with them everywhere. The method that has proven the most effective in retrieving and uploading information is through the use of the Internet. This is where the wallet-sized My Very Necessary Medical I.D. card comes in. Members have access to a secure database where physicians can link to a cardholder's personal health care history and related legal records directly. PHRs speak in a clear way for patients in the event that they cannot speak for themselves.
Beyond the world of MS
Beyond looking to share my personal insight into the world of MS, increasing the knowledge and resources available to people living with MS, and inspiring individuals to become proactive about their health care. Integrating art as a creative and emotional outlet has helped my process of healing. Indeed, I have become a fully-realized woman who works to create my own opportunities, beauty, and, in turn, legacy. I have become a designer of jewelry that reflects my passions--celebrating women and commemorating their accomplishments and amazing capacity for love. I feel that the desire for peace and love transcends every culture. It is what we all want to hold in our hearts. Just like having access to personal support, medication, answers, and understanding helps to ease fears when being diagnosed with a debilitating disease, beautiful pieces of art can help to commemorate inspiring stories, good fortune, and celebrations of life.
At the end of day, I am glad to be a wife and now a mother of five. After my initial diagnosis, I went through additional life changes: divorcing, remarrying, and giving birth to twin daughters. I am committed to the advancement of research and treatments in the fight against MS and am proud of the revolutionary ideas and treatments that are being developed. The foundation's 15th annual Race to Erase MS event took place last spring. In collaboration with Tommy Hilfiger. whose sister has MS, the gala has raised tens of millions of dollars for the cause. The event brought together designers and supporters to launch the "Orange You Happy to Erase MS" campaign, which was created to raise funds and awareness for the fight against the debilitating disease through sales of specially designed items in the official MS color. Designer and former Allure magazine fashion editor Alexandra Knight, luxury Swiss watchmaker Oceanaut, Keisha Whitaker's Kissable Couture, and Cosmetics International all designed items in MS orange that were sold at a variety of nationwide retailers.
Indeed, it is remarkable what can be accomplished by asking questions, having patience, and never giving up.
Nancy Davis is the founder of The Nancy Davis Foundation and Center Without Walls and author of Lean On Me.
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|Title Annotation:||Medicine & Health; multiple sclerosis patients|
|Publication:||USA Today (Magazine)|
|Date:||Jan 1, 2009|
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