A Special Connection
When Sandy Washa’s sister fell to the floor in the middle of Walmart while she and her family were vacationing in Greeley, Colo., she initially felt a rush of fear and panic. Her sister, Julie Wichman, had experienced several seizures prior to this incident, but her doctors were always nearby — not 500 miles away.
Washa quickly shifted into a take-charge mode, pulled out her cell phone and made a call to Wichman’s neurologist, Rana Zabad, MD. Dr. Zabad is director of the Multiple Sclerosis (MS) Clinic at The Nebraska Medical Center and had been seeing Wichman for several years and managing her MS.
“Dr. Zabad knew of our travel plans and had given us her contact information so we would feel comfortable leaving town knowing that we could reach her in case of an emergency,” says Washa.
Dr. Zabad, who was in a conference in San Francisco, took the call and guided them to a local hospital. Dr. Zabad also spoke to the ER doctors directly when they arrived at the hospital and made arrangements to send Wichman’s medical records. With Dr. Zabad’s help, they were out of the hospital within a few hours to enjoy the rest of their vacation. In the meantime, Dr. Zabad made arrangements for a follow-up MRI appointment when they returned to Omaha.
“Our care at The Nebraska Medical Center had always been very good but when Julie’s MS worsened and became more complicated, that’s when the level of care transitioned from very good to extraordinary,” says Washa. “It was a huge comfort to us to know that we could call Dr. Zabad anytime should something happen to Julie. This is just one example of many in which we’ve had the opportunity to experience extraordinary care here.”
The MS Clinic at The Nebraska Medical Center is home to one of the most comprehensive MS clinics in the region and manages some of the most complex patients.
The clinic follows more than 1,500 MS patients, staffs the only two MS-trained medical specialists in the area and is supported by an experienced and dedicated staff. Patients also benefit from the expertise of consulting specialists in areas such as physical and occupational therapy, psychiatry, neuro-ophthalmology, urology, pain management and OB/GYN.
It is the only affiliate of the National Multiple Sclerosis Society in Nebraska. It is also a part of the Consortium for Multiple Sclerosis Centers, a network of more than 150 MS centers that endorses a strong, multidisciplinary approach and full continuum of care.
But it is the dedication of the staff to their patients and their well-being that really separates the clinic from others, notes Dr. Zabad. “We’re committed to our patients from diagnosis to death,” she says. “We get to know our patients on a personal level because we’re not just providing MS therapy, we’re providing a comprehensive approach to care that addresses the physical, psychosocial and economic situation of each patient. Because MS affects each person differently, treating the whole person and the individual symptoms can make a significant difference in that person’s quality of life.”
Dr. Zabad says that little things like providing her contact information to complex patients is more the norm than not. “Knowing that I am just a phone call away is very comforting to my patients and their families,” says Dr. Zabad. “We are a very patient-friendly clinic. We know that with complex patients, continuity is very important. Our approach is that we always take the first call and then we direct their care.”
Director of the MS Clinic and assistant professor of neurology at the University of Nebraska Medical Center (UNMC) since 2008, Dr. Zabad was drawn to the clinic because of its strength and experience. Dr. Zabad attended medical school at St. Joseph Medical School in Beirut, Lebanon where she was born. She completed her residency in internal medicine at Wayne State University in Detroit, Mich., where she trained under a world-renowned neurologist and a researcher. It was here that Dr. Zabad began to take an interest in MS. She went on to complete an MS neuroimmunology fellowship for three years at the University of Calgary in Alberta, Canada, a region that holds the distinction of having the highest prevalence of MS in the world. At the University of Calgary, she trained under another distinguished neurologist and scientist in the field of MS.
Dr. Zabad was joined approximately two years ago by MS-trained neurologist Mac McLaughlin, MD. Dr. McLaughlin completed medical school at the University of Nebraska Medical Center, his neurology residency at Rhode Island Hospital in Providence and a one-year MS neuroimmunology fellowship at the University of Massachusetts at Worcester.
The MS Clinic is also supported by physician assistant Neil C. Jouvenat ll, PA-C, who has been with the clinic since 2007.
The depth of experience and expertise provided by the clinic is important, says Dr. Zabad, because MS is a very complex disease. It is one of the most common chronic neurologic disorders of the central nervous system, affecting approximately 400,000 people in the United States and approximately 7,000 people in Nebraska. MS can present with a myriad of symptoms including walking problems, muscle loss, sensory loss, vision impairment, bowel and bladder dysfunction, cognitive difficulties and fatigue, among many others. As the disease progresses, symptoms can become permanent. They can also come and go. Even severe symptoms may disappear completely. At its worst, MS can lead to severe disability. No two MS patients are alike, so prognoses varies.
Wichman was diagnosed with MS in 2005 at the age of 41. Wichman now believes that she probably has had the disease as early as age 20. For 20 years, she lived with strange and intermittent symptoms that would include low-grade fevers, high white blood cell counts and weakness in her legs. Because her symptoms were nonspecific, doctors were never able to pinpoint the source of her problems.
It wasn’t until 2004 when Wichman began having balance issues and difficulty walking that she was finally diagnosed with MS. Her primary care doctor suspected MS, which was confirmed by an MRI. Wichman heard about the MS Clinic at The Nebraska Medical Center while attending an MS meeting and made an appointment. Since then, she has been under the care of Dr. Zabad and Kathleen Healey, APRN, PhD, a nurse practitioner at the clinic. Healey has been with the clinic for more than 14 years and has completed a PhD that focused on MS.
Effective treatment and management of MS begins with early and proper diagnosis. If early treatment is sought, new therapies can reduce symptoms and change the course of the disease. However, the episodic nature of the disease as well as the fact that no two cases are alike can make the disease difficult to diagnose, as was the case for Wichman.
“While diagnosis is improving, even in the best hands, the disease is often both under and overdiagnosed,” says Dr. Zabad.
Over the past 20 years, the use of MRI has greatly improved diagnosis of the disease and is making it possible to diagnose the disease earlier in the disease process. “An MRI image can show areas of active inflammation, which indicates early signs of MS, and the location and size of lesions and plaques,” says Dr. McLaughlin.
Once a diagnosis is confirmed, an individualized treatment is developed. “Treatment for MS has improved tremendously over the last 20 years,” says Dr. McLaughlin. “Before the 1990s, we had no drugs for MS patients. The introduction of disease-modifying therapies in the early 1990s changed the way we treat MS patients. There are now 10 FDA-approved therapies available.”
New treatment therapies combined with aggressive management of symptoms which includes a combination of oral medications, physical therapy and subspecialty care continues to improve the outlook for individuals with MS. “Most patients can now go on to live fairly normal lives,” says Dr. Zabad.
The fact that Wichman had been living with the disease for years without treatment had allowed the disease to progress and become more aggressive. Within a few years of her treatment at the MS Clinic, she had become intolerant to the most commonly used disease-modifying therapies requiring her to switch to more powerful drugs to control her MS attacks.
After careful discussion and consideration with MS staff, Wichman decided to try a monthly intravenous infusion agent called natalizumab (Tysabri®) that can be very effective in preventing MS relapses. However, the drug also carries a 1 in 1,000 risk of causing a severe brain infection called progressive multifocal leukoencephalopathy (PML), a very disabling complication of the medication. Wichman and her family decided the benefits outweighed the risk.
The drug worked wonders for Wichman. For awhile, she began to think that she didn’t have MS at all. “I started telling people that it was all in my head,” says Wichman. She was able to continue to work at the switchboard center at a local hospital. She barely thought about the disease anymore.
to live fairly normal lives.”
Unfortunately, about three years into treatment, the headaches began. Headaches that felt like “a Mack truck had parked on my head,” says Wichman. When Wichman came to the hospital for her monthly infusion treatment and reported the headaches, Healey immediately sent her to the hospital to get an MRI. The MRI confirmed the worst. Wichman had developed PML. She was immediately admitted to the hospital and given a series of plasma exchanges that were performed to flush the drug from Wichman’s system. This was alternated with steroids to help suppress the growing inflammation.
“Dr. Zabad and her staff were amazing,” recalls Washa. “She immediately got in contact with the drug manufacturer and with physicians across the country who had experience in treating PML. Throughout the roller-coaster ride of Julie’s treatment, Dr. Zabad, Dr. Healey and the MS team have been there for Julie as well as the rest of us. They have answered our questions, provided treatment alternatives and options including examining medical trials and have done an extraordinary job of relieving our fears and concerns with this rare medical condition. To have a medical team who gives us such extraordinary care is very important because it’s all so new and scary and we all react with different emotional levels.”
The PML virus caused cognitive problems as well as occasional seizures. The seizures have been controlled and, while her condition as a whole has improved, she still suffers cognitive issues that forced her to quit her job. She lives with her parents now and tries to stay as active as possible. She volunteers from time to time and attends a Jazzercise® class at UNMC for MS patients several times a week to stay active. She deals with her memory issues by reading, doing memory games and keeping a memory box where she stores things to help her keep track of them.
“Julie manages very well,” says Washa. “Her sense of humor and positive attitude helps us all deal with it better and has been an inspiration for many. We have a strong family unit and we all work together to meet Julie’s needs, including her sister Susan Spring and her brother Michael Wichman and their families. If the tables were turned and it was one of us in her situation, Julie would be doing all that she could to help too.”
“Julie manages very well. Her sense of humor and positive attitude helps us all deal with it better and has been an inspiration for many.” Sandy Washa
Asked if she would use natalizumab again if she had to do it over, Wichman says “yes.” Administered once a month by infusion, it improved her quality of life and freed her from daily drug injections. Wichman is back to giving herself daily injections, a practice she isn’t exactly fond of. “If you connected me to a hose, I’d be a human sprinkler,” Wichman muses.
“The MS team has given her the best chance possible and quality of life,” says Washa. “We couldn’t ask for a better group of doctors. Had we been somewhere else, I don’t think we would have gotten the same level of care and service.”
“Like the African proverb ‘It takes a village to raise a child,’ in the case of serious medicine, it takes a village of extraordinary medical care professionals and family support; and, we feel fortunate and richly blessed to have both,” says Washa.
The future for MS holds promise. “There’s still so much we don’t know about MS, but we are learning a lot very quickly,” says Dr. McLaughlin. “It is the most actively studied field in neurology and it is seeing some of the most advancements.” The Nebraska Medical Center is part of that research and participates in clinical trials to give patients the opportunity to be a part of new advancements and breakthrough therapies.
Advancements that Wichman and her family hope will be seen in her lifetime.