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Multiple Sclerosis, Unpredictable but Treatable

Ohio Chapter Brings MS to Forefront in African-American Community

MS: The African-American Experience
By Fia Curley

At 25, Tamiyka Koger was a perfectionist, juggling graduate school and a fulltime job with Chris Redfern, now an Ohio state representative. But all of the sudden, her head was about to explode and she couldn't perform the most basic tasks of a job she used to take pride in.

"I had headaches beyond belief," Koger said, "it was just unbearable pain."

Of course, she blamed stress.

Koger was determined to continue working, but after some convincing from her coworkers and boss she decided to go to her doctor, who prescribed the drug Imitrex. Three days later, there was no change, so her doctor suggested Koger get an MRI and then a lumbar tap.

"Honestly I didn't know what it was," Koger said of the headaches. "I was paranoid because my uncle had recently been diagnosed with brain cancer."

When the doctor called her office to tell her the diagnosis, Koger said everything ran through her mind at once and she began to cry. After her boss gave her the rest of the day off, Koger called her cousin for support.

"I said, 'I have multiple sclerosis. I don't even know how to spell it,'" she said, adding that their research began with the basics.

After finding the definition in the dictionary, they went to the Internet and stumbled upon the Ohio Buckeye Chapter of the Multiple Sclerosis Society, Exit Disclaimer where Koger realized the individual symptoms she had endured over the past seven years were all related to MS.

Symptoms of MS can include sudden weakness, vertigo, fatigue, bladder, balance and bowel problems, nervousness, vision loss and tremors. Some symptoms make it harder for people with MS to maintain their jobs, creating a domino effect that changes their lifestyle.

MS in the Black Community

Although African-Americans are half as likely as Caucasians to develop multiple sclerosis, research from the National Multiple Sclerosis Society shows that the disease affects African-Americans more aggressively than their counterparts.

Multiple sclerosis is not contagious or hereditary. It is a neurological disorder that occurs when a person's immune system attacks normal body cells that make up the tissue covering nerve fibers. Once the tissue, or myelin, becomes inflamed and scarred, which takes place in the brain or spinal cord, communication among nerves is disrupted.

However, individuals whose parents or close relatives have MS seem to be more susceptible to the disease. Theories of geographical location, transient viruses and vitamin deficiency have abounded, but neither the causes for MS nor have a cure been found.

That is why the Ohio Buckeye chapter of the National MS Society has organized events to specifically target the African-American community within the 36 counties they serve.

"We didn't feel like the word was really getting out to the African-American community about everything we provide, about everything we can help them with," said Vice-President of Outreach Beth Robertson, who explained the organization is "responsible for delivering services to people who live with MS."

With eight licensed social workers, programs and services ranging from research, retreats and symptom management to equipment, information and personal care services are available to the 10,000 individuals living with MS or people who would like to become more knowledgeable about the topic.

According to Robertson, the chapter received about 35,000 telephone calls last year from people with MS, wanting to know how to pay for MS medication that leaves them with $400 co-payments, or how to apply for social security, secure affordable housing or keep their jobs.

From the social workers at the chapter Koger, also learned that MS was a disease that mainly affected white women, leaving her wondering how she had gotten it.

Curiosity and prodding from coworkers convinced Koger to attend a meeting where she was surprised to find out she wasn't the only African American in the room. Meetings led to increased participation with chapter through specialized yoga classes, MS fundraising walks and full disclosure as Koger merged the subject into her professional life. Her employer, Rep. Redfern, suggested Koger work to educate people outside the office by creating awareness about the topic.

"He was the most supportive boss I could have asked for at the time," Koger said. "Nobody knew about it. They only saw the truly disabled side where people can't walk, where people can't feed themselves, and sometimes they confuse it with muscular dystrophy."

Koger put the legislation together and handed it off to Ohio State Rep. Kenny Yuko, who also has MS, to champion the effort. In March 2006 it was passed with Gov. Bob Taft's signature, at the same time Koger finished her Master's degree.

With that accomplished, Koger, now a legislative liaison in the governor's office, said she would like to work through the Ohio Buckeye Chapter to focus on minority outreach, by encouraging African Americans with MS to step forward.

"The only way we're going to get the proper medical treatment is if we let people know what we want," she said.

But Koger's efforts have remained on the voluntary level because she knows she can't physically work two jobs. Instead the 28-year-old has now shed her overly perfectionist ways and has learned to put her health first, being careful not to overwork her body into a relapse. She attends the events she can, like the MS dinner in Columbus, but doesn't push her body for more.

And while the physical symptoms associated with MS relapses can seem overwhelming, Koger said bouts with mental challenges can also be common given the nature of the disease and the side effects of so many medications. But she has found that the topic of depression isn't something African-Americans want to discuss.

"With depression, African Americans need to understand and know it is there and it is real and it is treatable," Koger said. "And there's nothing wrong with depression medication at all—and I think African Americans have a hard time understanding that—because depression affects your entire well being. It can break you because MS deals with the nervous system."

Koger said she also recommends people try to find a counselor or someone else to whom they can vent. The Ohio Chapter provides a counselor if healthcare doesn’t cover the cost, because "a good support system is necessary at this time."

Regular doctor visits are also vital, Koger said.

"Yes, healthcare costs are rising, but it's more expensive if you go to the emergency room than if you go to your regular doctor—more expensive for you, the state, everyone," she said.

And although the diagnosis has changed aspects of her life, Koger said some changes have been positive.

"I don't get angry as much as I used to because if I get angry that takes too much energy and I might get sick," she said. "I don't take little things for granted. I live every day to its fullest as much as I can."

--
Fia Curley is a writer for the OMHRC. Comments? Email: fcurley@minorityhealth.hhs.gov

Links

Basics of Multiple Sclerosis
http://www.nlm.nih.gov/medlineplus/print/ency/article/000737.htm

Glossary of MS Terms
http://www.nationalmssociety.org/glossary.asp Exit Disclaimer

National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm

MS and African Americans
http://www.nationalmssociety.org/download.aspx?id=125 [.PDF, 524KB]Exit Disclaimer

Multiple Sclerosis: Hope Through Research
http://www.ninds.nih.gov/disorders/multiple_sclerosis/detail_multiple_sclerosis.htm


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