Finding Hope in Persistence, Advocacy

Finding Hope in Persistence, Advocacy

Area residents with MS struggle with disease that's often difficult to identify.

When Retta Yorns has a Multiple Sclerosis relapse, or flare-up, she said it feels like somebody has just pulled her plug and literally drained everything out of her body.

Yorns, a former Burke Centre resident who now lives in the Fairfax County section of Alexandria, was diagnosed with Multiple Sclerosis, or MS, 12 years ago. She was in her 40s at the time, but had experienced symptoms since college. The debilitating disease has motivated her to become involved though, since she said advocacy work is necessary in spreading awareness and funding research.

“Education in any kind of disease, it’s so empowering,” said Yorns. “Once people understand, they’re going to be more understanding.”

But people generally don’t understand MS, said Diane Kupec, spokeswoman for the National MS Society in Washington. As part of MS Awareness week, March 5-11, advocates tried to spread the work about the disease and encourage people to participate in MS events.

While no cure exists for MS, the disease is extremely unpredictable and is not necessarily visible to others. Some people with the disease can go years without having what is known as a relapse. It is often referred to as the invisible disease, said Kupec.

“It’s more of an ongoing nuisance illness that affects everyone in a different way,” said Kupec.

What a lot of people don’t understand is that MS doesn’t kill people, even though complications from it can kill, said Ron Lubcher, a Burke Centre resident living with MS. The effects are also misleading to people who do not suffer from the disease, since many people with it look completely fine.

When Yorns’ MS finally surfaced though, there was no hiding what she was going through. She said the fatigue hit her so strongly, that hiding the disease from others would have been impossible. When people look shocked after learning of her condition now, she wishes they could understand how far below the surface MS lives and what it does to people.

“It’s sort of like a duck on water. Ninety-five percent of what’s going on is below the surface,” said Yorns.

SINCE THE DISEASE affects people differently, it makes it difficult to treat, said Jenna Weiner, spokeswoman for the National MS Society. One person might experience vision loss, while another could suffer from cognitive function losses, such as critical thinking skills or memory loss. MS affects mobility for some, requiring the person to use a wheel chair or scooter to get around. Yorns said the disease is so camouflaged that when a couple joins the support group she belongs to, she often can’t tell which one of them has MS until they tell her.

“You really don’t know. You don’t know what the progression of the disease will look like,” said Lubcher. “They can’t tell you today; can’t tell you tomorrow.”

Fatigue is one of the common symptoms though, said Lubcher. Since Yorns said the majority of people with MS she has met throughout the years have all had type-A personalities, so the fatigue has a huge effect of those people. Lubcher was a recreational bicyclist — something he rarely does now. MS is commonly diagnosed when people are “in the prime of their lives,” he said.

Advocacy is what helps both Lubcher and Yorns. Through volunteering, they meet others with MS and spread the word to people without it.

“Ron is one of our most loyal and dedicated volunteers,” said Weiner.

The support groups helped Lubcher when he was diagnosed about 12 years ago. Since the Internet was not as sophisticated back then, the information about the disease was harder to find. People sharing their experiences helped him learn about it, and they also helped ease some of the fear he had.

“It’s always in the back of your mind that it’s coming back,” he said. “Relapse is a real fear.”

MEETING OTHER PEOPLE who have bounced back after experiencing relapses that are sometime unimaginable keeps others positive. Yorns has said some can be completely blind for months, or even years at a time, and then one day they can see again. She knows of some people who lose mobility completely, and then can all of a sudden walk again.

“My thought was, I wanted to stay on top of it, and I wanted to help people,” he said. “I wanted to learn as much as I could, but be exposed to people in the MS community.”

Yorns said people at the MS Walk, MS Challenge Walk and the MS Bike Ride, all of which take place annually throughout the nation, attract athletes with no connection to the disease at all. It’s those people they reach out to and thank, and the response is wonderful, she said.

In addition to raising awareness, the walks and the bike ride raise funding for research. There are no fund-raising minimums to participate, though. Lubcher’s 6-year-old nephew, Jamey Bocompani, started calling people and raised more than $1,000 for his uncle’s walking team. Jamey will join his uncle in the walk in Reston, Sunday, April 15.

Doctors use so many different medicines to treat MS, some of which are effective in making relapses less frequent and less intense. But so much is not known about the disease, said Yorns.

“Stem cell research is going to do a lot, if we can ever get that passed,” she said.

Yorns attends the MS Advocacy Conference in Washington, D.C. each year, and takes the cause to Capitol Hill to try to influence local senators and representatives to spend more money on research.

Drugs can be as expensive as $20,000 a year, for just one drug, she said, which is why more needs to be done to help those without the resources to deal with treatment. Lubcher said insurance companies can sometimes make coping with the disease even more stressful than the disease itself, which is why he hopes that long-term health care and disability insurance will become available to people with MS in the future. In the mean time, when insurance companies deny claims, Lubcher said it shouldn’t be acceptable.

“Some people won’t fight it; you have to stick up for your rights,” he said. “You have to be persistent.”