Health watch: MS patients not missing in action
With employer support, workers' careers aren't derailed by a diagnosis of multiple sclerosis.
When a doctor delivers the diagnosis of an incurable disease, lives can't help but change. More than 400,000 Americans and 2.5 million people worldwide have been diagnosed with multiple sclerosis, with another 200 cases occurring each week in the US alone.
Typically diagnosed in adulthood, MS patients may possess skills, education and experience that make them irreplaceable employees-their bodies beginning to betray them just as they have become established in their careers.
MS is an autoimmune disease that causes the body's defenses to turn inward. It is characterized by lesions on the brain and spine. Although this umbrella term is a tidy way to characterize the condition, the symptoms themselves are as varied as the people who suffer from MS.
This variance may present a challenge for doctors, but for patients and their employers, it means an MS diagnosis does not equal the end of a career. With understanding and open communication, employers can retain those who are often some of their most valuable employees, and those employees canpreserve the fulfillment that comes from meaningful work.
Kristin McConnell manages transportation for Solae/DuPont Nutrition & Health, a large interstate corporation in Dublin. She was diagnosed in 2009, about six months after delivering her child.
"From what I have learned, MS triggered by pregnancy is not unusual," she says. "Six women were diagnosed the same year as me in the same hospital shortly after giving birth." Now, on top of coping with demands of her career and challenges of parenting a child, she also experiences MS symptoms of depression, fatigue, discomfort, heat sensitivity, cognition and concentration difficulties, numbness, sexual dysfunction, bladder issues and neuropathy.
McConnell is able to manage it all through determination, routine and lifestyle management. She maintains a healthy lifestyle with a focus on fitness, a balanced diet and plenty of fluids, plus ample research into her condition and a dedication to finishing the task at hand.
"I have a desk job, so I just make sure I get up and keep moving when needed," she says. "I rarely take lunches as I do not like losing momentum. If I am going, I have to keep going-I don't really know how to turn it off."
The reality of MS is always there in the background, but so are the positives that remain in life.
"I have met several people that suffer from MS, and I know my situation could be so much worse," McConnell says. "I am thankful I can still get out of bed, climb steps, play tag with my daughter and all those other things we take for granted."
Jaime Imitola, MD, a neurologist at the Ohio State University Wexner Medical Center, specializes in treating patients with MS and says that the key is to manage symptoms so patients are able to return to the things they love. That process looks different for every person.
"There are no two patients who are the same, and the management must be individualized," he says. Lesions may attack the white matter or gray matter of the brain, or may appear on the brain stem or spinal cord. Sometimes, depending on their location, the lesions don't cause any distinct outward symptoms, but they may provoke pain, numbness, fatigue, blindness, cognitive impairment, headaches, mobility issues or a host of other symptoms-all of which are also symptoms of many other disorders or of nothing serious at all.
Imitola says technology has made leaps in the past decade, and imaging technology makes it possible to accurately assess the state of the disease.
"We have been helped tremendously by the MRI," he says. "It is a powerful technique because it allows you to understand the age of the lesion and the location." MRI is a standard diagnostic tool for MS and is also used periodically to monitor the impact drug therapies are having on a patient.
At this point, it is not possible to heal existing lesions, Imitola says. "The scars are there," he says. "They are going to remain there. The goal is to treat the symptoms." Drug therapy helps lessen the effects of the lesions, and drugs plus an overall healthy lifestyle may prevent new lesions from forming.
"One of the most important things is to stop smoking," Imitola says. Also, because the disease is more prevalent farther from the equator and MS patients tend to have low Vitamin D levels, it is believed increasing Vitamin D intake may have a protective effect.
After diagnosis, when a patient may be feeling low both physically and emotionally, it is important to begin rebuilding a normal life.
"You can't give up," Imitola says. "You don't need to do it all on your own, but you are your own best advocate." Learning about medications and knowing what questions to ask doctors is an excellent start. Another big step comes when the patient considers revealing the diagnosis at work.
Steve Nissen, senior director of benefits and employment for the National Multiple Sclerosis Society, works with a team of advocates who spend their days helping MS patients address complex benefits and employment issues.
"What a lot of people grapple with once they have been diagnosed are the issues surrounding disclosure and requesting accommodations," Nissen says. "Their symptoms may not be visible, and the disclosure dilemma becomes that much more complex."
Nissen says some MS patients leave the workforce early and voluntarily, but it may be because they don't fully understand their legal rights under the Americans with Disabilities Act. Patients would be wise to research those rights and to bring ideas for accommodations they may need to the employer's attention.
Employers, for their part, profit from recognizing the value in making adjustments for employees who suffer from MS, which may not cost much at all.
A flexible schedule may help, including the possibility of working from home periodically to lessen distractions from a bustling workplace. A larger monitor may help a person experiencing visual difficulties, and a different style of computer mouse may be of great benefit to a person experiencing small motor problems, Nissen says. Company-wide policies may benefit all employees without drawing attention to the person who is ill, he says.
"No one wants to be seen as being treated differently," he says. But measures like following up verbal communication with written details, or choosing ergonomic furniture can increase efficiency all around-not just for those with MS.
Making these accommodations strengthens the bottom line. "Because MS is often diagnosed later in life, these people often come with a wealth of training, experience and education," Nissen says. "They have a lot to offer the employer, and their skills and talent are too valuable to waste."
Kristin Campbell is a freelance writer.