Thursday, April 26, 2018
Health

Multiple sclerosis patients, doctors appreciate help from Ann Romney, Michelle Obama

Regardless of your political leanings, at least one group of Americans was grateful for the Republican and Democratic National Conventions: Those affected by MS.

People with multiple sclerosis appreciated the shout-out from Ann Romney, wife of presidential nominee Mitt Romney, at the Republican National Convention in Tampa and from first lady Michelle Obama with the Democrats a week later in Charlotte, N.C.

Romney has been living with MS since 1998. Obama's father lived with the disease for about 30 years before his death at age 66. Both women related how their lives were affected by MS.

That kind of exposure does more than increase awareness of an often misunderstood disease that afflicts 400,000 Americans, experts said.

"In the case of Ann Romney, seeing someone at the podium, in the national spotlight, living an obviously busy, active life allows others to see how much you can accomplish with MS," said Dr. Stanley Krolczyk, director of the multiple sclerosis division in the department of neurology at USF Health. "It puts a different face on the disease when celebrities, like Montel Williams and Clay Walker, for example, go public and talk about living with MS."

Jzon Livingston Sr., a patient of Krolczyk's, agrees. The 33-year-old self-employed IT administrator was diagnosed with MS four years ago. With treatment, he's been able to continue working and keep up with his three children, ages 15, 13 and 11. Livingston was moved when Obama described watching the decline in her father.

"That's what the average person needs to know about MS. It's a hard disease to have," he said. "Without knowledge of how it can affect lives, there's no understanding. Without understanding, there's no action."

• • •

Multiple sclerosis is a chronic disease of the central nervous system that targets the brain, spinal cord and optic nerves. It can range from mild to severe, where the patient is paralyzed or blind. The disease is unpredictable, and symptoms may start suddenly and persist, then resolve. Sometimes, it seems to be dormant and patients may go months or years without a flare-up. Others, though, have symptoms all the time.

For a long time, there wasn't much doctors could do for MS patients. But research and new drug therapies have changed that.

"Until 1993, there was nothing doctors could offer patients except a wheelchair," said Krolczyk. Interferon was the first drug approved for the treatment of MS. Several more followed.

One of the most promising drugs is the cancer fighter known as Campath. It has been used to treat leukemia for decades. In MS patients, it eliminates certain cells in the immune system that attack the spinal cord and brain. FDA approval to use Campath to treat relapsing-remitting multiple sclerosis (flare-ups followed by improvement) is expected in the next six to nine months.

"This is the most effective treatment seen so far for MS patients," said Krolczyk. "This is the first drug where patients got better than they were when they started using it. There is a trend toward improvement in disability."

• • •

Caroline Holloway of Largo, also a patient of Krolczyk's, started taking Campath in 2008 as part of a clinical trial. The drug is administered intravenously once a year. Since then, the 28-year-old veterinary technician hasn't had a flare-up of symptoms.

"I hardly even think about it now," she said. "It has helped me function like a normal person, maybe a little more tired than other people, but as far as noticeable symptoms, if you saw me you would not know that I had MS. Hopefully, that won't change and the treatment will continue to work for me."

Holloway didn't watch the political conventions, but heard that MS got some attention. "It brings awareness when famous people talk about it. And when they are looking for treatment, (researchers) come up with something."

Holloway notes that Campath, which will be marketed under a different name if it is approved for treating MS, is not without side effects. Because it suppresses part of the immune system, she has been treated for a few infections over the years. And Krolczyk adds that some patients develop a rash and itching at the infusion site. It can also cause a type of thyroid disease and a serious, but rare, blood-clotting disorder. "Patients have to be followed and monitored closely and get the required blood work" to prevent complications, he said.

• • •

The USF Health Multiple Sclerosis Center marks its 20th anniversary this month. Krolczyk says it's an exciting time to be in the field. Doctors now have several drugs to offer patients, and many others are in development.

The USF center usually has about five clinical trials open at all times. Participating patients get blood work, scans and checkups for free. And they don't receive placebos; the new drugs are compared to existing therapies, not dummy drugs.

"To be able to finally say, 'You have this disease, don't worry. We're going to have it under control,' " said Krolczyk. "Now we can paint them a better future."

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