Cara Caranci was in high school the day her thumb began to quiver. She sat on the side of her bed and watched the finger shake uncontrollably for several minutes. She remembers thinking: “Don’t be MS.” Whether the tremor was her first major manifestation of the disease multiple sclerosis, she and her doctors cannot say. But several years later in 2000, when Caranci was working on a master’s degree in physical therapy at Husson College, her vision blurred and she became blind. Several days later, she was diagnosed with MS.

“I don’t think my thumb was a premonition,” said Caranci, who is now 28. “But I do think I picked the education that goes with the disease.”

Caranci, who earned her degree in 2001, told me this story last week in the office of the Maine Chapter of the National Multiple Sclerosis Society in Hampden, where she is a full-time volunteer. “I was a completely independent 22-year-old. I could have gone anywhere. But it all came to a screeching halt,” she said. The blindness ended within weeks, but Caranci has had several recurring symptoms. She walks with an arm-brace cane or supports herself by leaning on walls and furniture. Although much of her life is devoted to educating and helping others with MS, she has never spoken publicly about her own experiences. In fact, she often has been silent and isolated. “She’s been inside herself,” said her father, Charles, who owns a bakery in Rhode Island. “When she started volunteering, it brought her out.” If her story helps just one other person cope with MS, said Caranci, who is shy and soft-spoken, “it’s worth it. Anybody can get MS. It changes your life, but there is hope.”

When most of us think of MS – if we think of it at all – we likely think of Jerry Lewis and his Labor Day telethon. In the last week, at least six people with MS told me that when their doctors told them they have MS, they thought of Jerry’s kids. They don’t any more.

For the record, Jerry’s kids have muscular dystrophy, a neuromuscular condition that is primarily genetic. Multiple sclerosis is a progressive disease of the central nervous system, and, while much knowledge has been gained from research in the last 50 years, no one knows what causes MS, and there is no cure.

On the other hand, many of the symptoms of MS can be managed and treated. Many people with MS are gainfully employed. But its effects can be devastating.

With MS, the immune system mistakes the body’s own tissue – myelin – as a foreign substance and strips it off the nerve fibers. The scars or lesions left behind disrupt any number of messages traveling to nerves. Think of getting bad reception because of a frayed phone wire.

In the body, that same effect is the result of a lesion. The word sclerosis comes from the Greek word for hard, in this case from scarred tissue. Multiple refers to the many places within the central nervous system that may be damaged. The effects are unpredictable and wide-ranging: slurred speech, tremors, stiffness, dizziness, visual problems and mobility limitations. The most common symptom is intense fatigue. Many people with MS take medications to manage symptoms, treat relapses or, they hope, slow down the disease’s progression. Others use some form of alternative or complementary therapy, such as yoga, diet, massage, meditation and dietary supplements. In Canada, a new cannabis-derived drug, which is sprayed into the mouth, is being used to treat spasticity.

Many people with MS wear red rubber bracelets imprinted with one word: HOPE. Charles Caranci, who works with large machinery at his bakery, had the red band tattooed around his wrist. He hopes that by slowing down the course of the disease, his daughter will be healthy when a cure shows up.

However you are now picturing MS in your mind’s eye, you are probably still not picturing a vibrant woman in her 20s. You don’t picture her having temporary blindness, losing muscle coordination, buckling at the knees, using motorized carts in grocery stores or volunteering 40 hours or more a week for a medical cause. And you’re not alone in your thoughts. Caranci tells the story of stopping at a convenience store late one night. She was experiencing ataxia, an MS symptom that causes a lack of muscle tone. She was wobbling. The store clerk took one look at her and began singing the old folk tune: “Did you ever see a lassie sway this way and that way?” He thought she was drunk. “I looked at him and said: ‘No, you didn’t say that,'” said Caranci.

But the fact is that MS, which affects 2.5 million people worldwide, strikes most commonly between the ages of 20 and 50.

Equally stunning are the numbers for MS in Maine. Current data indicates that approximately 3,000 Maine residents have been diagnosed with MS. That’s about one out of every 400 Mainers, a prevalence rate that is 70 percent higher than the national average.

More facts: Worldwide, MS occurs with greater frequency in areas of higher latitudes. An estimated 400,000 Americans have MS, and most of them live in northern states such as Maine. MS is most common among Caucasians and is two to three times more common in women as in men, according to the National MS Society, which has invested $500 million in research over the last 60 years.

These numbers were at the forefront of presentations given last week at a luncheon hosted by Women Against MS, a nationwide education and fundraising program. Several hundred people attended as a way to support those who live with the disease in Maine and to help raise funds for local programs and research. Last year, the Maine Chapter raised more than $1 million for programs in the state. While Portland has held luncheons in the past, including one earlier this year with the actor Teri Garr, the national chairwoman of WAMS, this was Bangor’s first time hosting.

Judy Horan invited me to the luncheon. Judy, who is as energetic as anyone I know, is president and general manager at WLBZ-2. We met years ago through various arts events and have always had the type of friendly conversations women in demanding careers have: supportive, engaging and too infrequent. When Judy was diagnosed with MS in 1997, she was also in the midst of an organizational restructuring at work. The onset couldn’t have come at a worse time – although no one will tell you there is a good time to get MS.

Still, Judy spoke with a great spirit of gratitude about her life when we met for lunch a day before the WAMS event. It was the first time I had seen her since she developed a slight limp. In fact, I didn’t notice her gait until she pointed it out, lamenting, with her typical self-deprecating wit, that she would eventually have to give up her beloved high heels. Then she opened her purse to reveal a snazzy, collapsible cane. She told me that at a recent conference, she was nervous about using the cane in front of her colleagues. But she did it anyway, and her anxiety eventually went away.

“To me, MS is about balance,” she said. “MS isn’t a blessing, but it has given me many. I get so much more from this than I lose to it. How wonderful to know your time is important, to make sure your priorities are good. Sometimes I think: What if someone said you don’t have to have this anymore? It’s given me so many gifts. It would be hard not to have them.”

Jackie Waldman shares that sentiment. Waldman, who was diagnosed with MS in 1991, writes “The Courage to Give” series of inspirational books and has appeared on “Oprah” as a spokesperson for the personal rewards of charitable giving. Her book grew out of her own history of being an athlete and overachiever, then being forced to ask for help from others, and ultimately finding strength in giving to others. The process is one she, Horan and Caranci all spoke about in separate discussions with me. Independent, professionally driven women are the last to ask for help. They find it the hardest to accept help. But MS forces them into what Waldman calls “a new normal.”

Last week, Waldman was the keynote speaker at the WAMS luncheon. Mostly she shared a story of hope, but the room was not without emotional responses. A woman next to me privately wiped tears from her eyes. Two other women at my table told me their other sister was in the “final stages” of MS. I fiddled with my red wristband, listening to Waldman’s triumphs and feeling conflicted. How could Waldman be so cheery?

“How bad could my life be if I wake up each morning and make a vow to help someone else?” Waldman told me. “MS has been such a good thing for me. I needed it for my spiritual growth. Before, it was about my body, not my spirit, about my work, not my inner peace. When that was snatched away, I had to find a new life. I had to go within. Joy and happiness and love really, really do mean the most, really, really do define our existence.”

When I suggested that she seemed somewhat buoyant about her MS, Waldman corrected me.

“I don’t enjoy the pain, the overwhelming fatigue,” she said. “I sometimes say I wouldn’t mind going back to the other life, but I’d also have to have the spiritual grace I have now. My pain and struggle have been my blessing. My prayer and hope is that that will come true for others also.”

Caranci, who was given a volunteerism award at the luncheon, also has learned something about herself in the last five years, during which she has had several exacerbations, or relapses, requiring treatment with steroids. She has wavered between retreating from the world and rejoining the world. With the combination of medical expertise and the compassion that comes from personal experience, Caranci is uniquely equipped to be the change she had hoped to create before she got MS.

“There’s a lot more to me than I originally thought,” she said. “I’m stronger than I gave myself credit for. I’m smarter than I gave myself credit for. Nobody is perfect. Every body has problems. I don’t have to feel ashamed because I have a problem. We can’t stop the disease, but we can change the impact it has on our lives. You have to be your own advocate. It’s your body. You also have to believe that there will someday be a cure or some way to repair the damage or both.”

Alicia Anstead can be reached at 990-8266 and aanstead@bangordailynews.net.