Multiple sclerosis happens most often in adults, but doctors are diagnosing more children and teenagers with the condition. Of the 400,000 diagnosed cases of MS in the U.S., 8,000 to 10,000 are in people younger than age 18. Neurologists think there are probably many more kids with MS that haven’t been diagnosed.
Soon after being diagnosed in January 2002, her physical status plummeted quickly. The former fitness buff who regularly skied and jogged describes the overwhelming MS-induced fatigue that plagued her almost daily. "Sometimes my eyes hurt too much to watch TV," Levy tells WebMD.
During that period, she traded her running shoes for a cane, broke off a relationship with someone she had once considered marrying, and relinquished a long-sought full-time position as director of a new charter school, taking up part-time work instead.
Then, just as quickly as the symptoms struck, they abated. "I had tried all the drugs on the market for MS. As a last resort, I even did chemotherapy." She found relief through an experimental drug (not yet approved by the FDA for MS).
Now, for the second time in three years, she's had to evaluate her future. "I still dream about going for a jog. But now I can walk home from a movie 20 blocks, instead of taking a cab," Levy says. She is back to work full time, sometimes pulling 12-hour days. And she's re-established a relationship with her old boyfriend.
Through the ups and downs of the disease, people with MS must go on with their lives. Very often, that means making long-range decisions about how to live, from employment to recreation -- and being open to re-evaluating them as needed. In addition to these "big picture" decisions, practicing seemingly small lifestyle strategies can make the disease more manageable.
Working With MS
Like many others with MS, Levy was forced to make decisions about her professional life. Among the questions she faced: Do I tell my employer and, if so, when? Can I continue working? What accommodations will I need?
New laws, ever-increasing resources, and improved attitudes are making these decisions easier. Currently, 43% of adults who have had MS for 12 years retain employment, according to an ongoing nationwide study sponsored by the National Multiple Sclerosis Society (NMSS).