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When you're young with MS

Twenty-somethings find support and hope in peer-group programs

PHOTOS: Bob Brawdy, Tri-City Herald

Arika Harris

Arika Harris

Arika Harris was only 25 when her off-and-on blindness and numbness were finally confirmed as MS. Overcome with fear and sadness, she questioned all her assumptions about the rest of her life, including love and marriage, work and children.

“I wanted to sell my house,” says the Tri-Cities resident. “I had been dating my boyfriend, now fiancé. I could understand if he wanted to run. I was so scared all the time. I couldn’t talk about it. I couldn’t say it.”

She certainly didn’t want to go to any MS events for fear that she might see her future in a wheelchair. So she was inclined to ignore the pamphlet her nurse mailed her on an upcoming “Dinner for Two” social in Seattle for young adults with MS.

“I don’t know why I changed my mind,” she says. “But I’m glad I did. I got there, sat down and saw a lot of girls who looked just like me.”

Those diagnosed with MS in their 20s or younger can feel like their lives have ended before they’ve begun. The disease forces them to rethink their future just as they’re working on degrees, embarking on careers, planning marriages and starting families.

And because MS typically is diagnosed between the ages of 20 and 50, they can feel isolated from their peers as well as the older participants in MS self-help groups and functions.

“MS is being detected at younger ages than in the past thanks to better diagnostic tools and increased awareness, both in the medical community and in the general population,” says Dr. James Bowen, medical director of the MS Center at Evergreen Healthcare.

“There is also an increased recognition that MS can affect young people and even children, even though it is very rare in those age groups,” he adds. “Only about 5 percent of the cases nationwide are in people under age 18.”

Teenagers and young adults with MS have different concerns with the disease, which can affect school performance, peer relationships and life goals.

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“Young adults face the task of establishing families, completing educations and launching careers,” Bowen says. “An unpredictable disease that can potentially lead to disability makes this type of planning for the future difficult.”

To help meet their unique needs, the Greater Washington Chapter is offering more in the way of programs and support for adults between the ages of 18 and 30.

“Before creating Dinner for Two, we talked with several young adults who said they wanted to meet others ‘like them,’ but they wanted to do it in a fun and social atmosphere,” says director of chapter programs, Erin Poznanski. “After the first Dinner for Two program in Seattle, we realized we hit the mark. People were exchanging business cards, e-mail addresses and phone numbers. Friendships were forming right before our eyes.”

Now, Dinners for Two are springing up in other areas as well. Arika and another young woman, Jaime Hagarty, were so inspired by the Seattle event that they offered to set up one in the Tri-Cities area where they live.

Jaime & son

Jaime and son

“This isn’t your typical support group,” says Jaime, a 31-year-old single mom who has become actively involved planning and participating in Chapter events, including the MS Walk, Advocacy Day, Girls Night Out and Kids Camp.

“MS is difficult enough. Why does life have to revolve around it? That’s not who we are,” she emphasizes.

Jaime started a blog about her experiences with MS after her doctor suggested she keep a journal as a form of therapy.

“I never imagined that anyone would read it,” she says. “Within a week I had gotten responses from all over the world.”

The blog gave Jaime, who earned two college degrees but is unable to work, a new sense of purpose. She has since expanded it to include links to organizations, drug companies and other resources.

“I just feel that everyone should know there are others out here going through the same things and we need to stick together,” Jaime says. “There are people out there who feel that MS is a living death sentence. It is not. Life will change, we have to learn to adjust, and there are going to be some really bad times, but there can be a lot of great times, too.”

For Arika, connecting with her MS peers has made all the difference.

At that first Dinner for Two, she didn’t see a bleak future in the faces of those around her. She saw reassurance. One young woman, in particular, gave her hope. The woman had been diagnosed seven years ago and had a three-year-old son.

“When I left there, I cried because I was just so grateful,” she says. “It was such a relief.”

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