Stephanie Hensley – Strong Will, Strong Faith
Stephanie Hensley was only 19 years old when her first
symptoms appeared suddenly and without warning in 2003. The vision in her left
eye became so blurry, she couldn’t see and she had a debilitating headache. An
ophthalmologist diagnosed her with optic neuritis, inflammation of the optic
nerve, and referred her to a neurologist immediately.
Dr. Lincoln credits the BP MS 150 with raising much-needed dollars for research that directly benefit patients like Stephanie Hensley. “Many of the young women we treat are just getting their careers and families started when they are faced with this devastating disease,” said Dr. Lincoln. “Stephanie has such a positive attitude. She really is an inspiration not just to others who are affected by MS, but for her healthcare team as well.”
“I was only 19, and I don’t think I really processed what my referral was leading up to,” said Hensley. At the time, she wasn’t aware that optic neuritis is a common first symptom of multiple sclerosis (MS). An MRI revealed multiple lesions on Hensley’s brain, and she received a life-altering diagnosis. “My neurologist told me that I had Relapsing-Remitting Multiple Sclerosis (RRMS), and I was absolutely stunned,” said Hensley, who had begun experiencing other symptoms including numbness in her side and her face. “I didn’t know anything about MS or what it might mean for my future.”
Her first course of treatment began with weekly injections and she was able to manage her symptoms with only a few minor relapses each year. In 2008, Hensley married, and she became pregnant with her first child shortly thereafter. Although she could no longer continue her injections, she remained healthy during her pregnancy and her daughter’s birth. She resumed her medication three weeks after the baby was born, but suffered a major relapse a few weeks later. “I had vertigo so bad that I couldn’t walk,” said Hensley, who suffered hearing loss and was forced to go on short-term disability. “It was devastating. I was only 25 years old and I was disabled.”
Her symptoms eventually subsided and she became pregnant with her second child. “Again, I had a perfect pregnancy and childbirth experience, but I had a major relapse a few months after my son was born,” said Hensley. “My body was completely numb from the waist down and I had to walk with a cane.
It was heartbreaking because I couldn’t do the everyday things to take care of my babies.” Stephanie approached her neurologist about trying a new course of therapy. She had grown tired of the self-injections and was developing reactions at the injection site. Under her doctor’s advice, in May of 2011 she started an encouraging new drug in the form of a daily pill. “Life felt normal again. I could play with my kids and I was back at work.”
Sharing Her Story
She soon began speaking at events on behalf of the new drug to share her story of hope with others who suffered from MS. But after a year, her symptoms returned and her doctor ordered an MRI. “I will never forget the day the nurse called to tell me the news,” said Hensley. Over the course of one year, she had developed 29 new lesions and four were active. “For the first eight years since my MS diagnosis, I had accumulated 30 total lesions. And now I had doubled that in just a year. All we could ask the doctor was ‘What now?’ I was very, very scared.”
Hensley and her neurologist discussed a new drug, TYSABRI, which is administered via monthly infusion. Hensley’s neurologist told her she was not a candidate, however, since she carried the John Cunningham (JC) virus. The JC virus is a highly common and usually benign virus that infects 70-90 percent of Americans, most of whom will never even know they have it. But for those with relapsing forms of MS taking certain therapies that impact immune surveillance such as TYSABRI, the virus can lead to a potentially disabling or even fatal brain infection called progressive multifocal leukoencephalopathy (PML). She reluctantly resumed her original treatment, resigning herself
again to weekly self-injections and the associated side effects.
“I knew it was just a matter of time before I had another major relapse. I wanted to find someone who was willing to treat my MS in an aggressive, yet responsible way,” said Hensley. She and her husband made an appointment to see John A. Lincoln, M.D., Ph.D., who is an Assistant Professor in the Department of Neurology at UTHealth Medical School and is affiliated
with the Mischer Neuroscience Institute at Memorial Hermann-Texas Medical Center. “My husband and I heard Dr. Lincoln talk at a few MS events and were intrigued by what he had to say. We felt an immediate connection.”
At first, Dr. Lincoln advised Hensley to continue her current regimen while he monitored her, but her condition deteriorated quickly and her arms were becoming severely numb again. “He brought it under control, but said we really need to talk about more aggressive therapy.” Dr. Lincoln and Hensley agreed that time was of the essence, and her disease had progressed to the extent where her previous treatment options were becoming ineffective.
“Patients who are immunosuppressed and that have been exposed to the JC virus do have an increased risk of PML,” said Dr. Lincoln. “Although the risk isn’t tremendously high, it increases as time goes on. In Stephanie’s case, the risk is manageable and is outweighed by the benefits at this point. Of course we are monitoring her very closely to mitigate that risk.” According to Dr. Lincoln, current literature shows that changes suggestive of PML can be detected diagnostically and treated effectively if caught early.
A New Freedom
As for Hensley, she is enjoying a new freedom that she never dreamed possible for the first time, nine years after her diagnosis. Since beginning the TYSABRI in March of 2013, she has had no new lesions and her MS symptoms have virtually disappeared. She credits Dr. Lincoln’s willingness to try a progressive approach with helping her manage her disease to fit her lifestyle. “This has been my year!” she said. “I’m free of pain medication, I am having zero side effects and I feel normal again. I am so thankful to God for leading me to Dr. Lincoln.”
According to Dr. Lincoln, the treatment plan for Hensley is to remain on TYSABRI for another year. “We will aggressively monitor her during the transition to another therapy not directly associated with PML risk, but that can still suppress the recurrence of activity,” he said. “Although we believe in aggressive treatment when necessary, we balance it with caution.”
The next therapy for Hensley is still unknown, but Dr. Lincoln is optimistic and reiterates the importance of research funding through events such as the BP MS 150. “There are many promising drugs on the horizon,” he said. “While we continue to search for a cure, there are advancements made every day.”