Four years after being told there was no cure for her multiple sclerosis, Alexa Silvers is no longer living with the crippling disease.
Silvers was diagnosed at just 16 years old.
“My leg just stopped working one day on the Strip,” Silvers said. “I couldn’t really walk to the car and my ankle kept rolling. My leg was giving out. I ended up getting an MRI for what they thought was a pinched nerve, and it turned out that I had multiple sclerosis.”
According to the National Multiple Sclerosis Society, “Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.” Only 2 percent of children are diagnosed with this disease, which primarily shows up later in life.
Silvers was given a variety of treatment options that had a 50 percent chance of slowing down the effects of her disease, but not completely stopping them. She was unresponsive to three of those treatment options and had to settle for injections of steroids that she could only use for two years.
“I felt really distanced from everyone,” Silvers said. “I felt like I had to keep it a secret because in high school people don’t really understand things. I felt left out of a lot of things because of my legs. I couldn’t go on the senior trip because I knew my legs couldn’t handle walking around Disneyland all day.”
Silvers surrounded herself with a support group of friends and family that helped her stay positive, no matter how bad it got. However, only a few people actually knew about her disease.
“It was really hard on me to stay hopeful when I had doctors telling me all the time, ‘There’s no cure, your MS is aggressive.’ At one point my doctor even told me, ‘Your images look like the images of someone who should be in a wheelchair.’ I remember that terrified me, being 18 and someone telling me that I could be in a wheelchair within a few months. It’s just really hard to stay positive with that kind of message being spewed at me.”
Silvers was reading new articles about MS when she happened upon an article about a stem cell clinical trial in England that had a high success rate at curing MS. She quickly looked for similar trials in the United States and found one in Chicago with an 80 percent success rate.
“I had MS for three years at this point and none of my doctors had told me about anything like this, so it was just like how could this be a thing for so long and I never heard of it,” Silvers said.
She contacted the clinical trial and they asked her to come to Chicago to see if she would be a good candidate. She went over spring break of her freshman year at the University of Nevada, Reno.
After a few tests, she was deemed a candidate, but they were hesitant to admit her to the trial because of her age and the aggressive nature of her MS. They didn’t want to risk her being put in the placebo group, so they admitted her on a compassionate basis. It meant she would have to pay, but she would finally get the treatment.
However, her insurance company did not want to pay for this experimental treatment. After two denied appeals asking them to change their mind, she had to resort to the help of her family and friends.
She opened a Go Fund Me page asking for $115,000. Silvers said that was the amount of money they needed just to get in the door, not including travel, food and lodging. Her page blew up overnight and she raised the exact amount she needed.
“I felt very blessed and it was kind of this feeling of disbelief, the whole thing was a feeling of disbelief, from beginning to end,” Silvers said. “Being told there was a cure and then being told it cost that much and then somehow ending up with that money and the whole time it was kind of like wow this is really happening.”
She arrived at Northwestern Memorial Hospital on the Northwestern University campus in Chicago in July. After running more tests to make sure she was healthy enough to go through the treatment, she was admitted to the hospital for a round of chemotherapy.
Dr. Richard Burt told her during their second meeting that she would lose her hair during the treatment, which was something she didn’t expect to have to deal with.
“Dr. Burt was the first doctor who told me he could help me, and I had a chance at a normal, MS free life,” Silvers said. “Being MS free outweighed any other options.”
After her first round of chemotherapy, she was injected for a week with a medicine that made her stem cells grow at a faster rate. They were then separated from her blood and she went through another four rounds of chemotherapy to weaken her immune system.
While Silvers was going through chemotherapy, her doctors were wiping her stem cells of their memory of MS. When her immune system was weak enough, her stem cells were put back into her body. Within the next 10 days, her stem cells began multiplying and working. She was discharged and sent home MS free.
“Chemotherapy is really hard on your body,” Silvers said. “You feel weak and tired. I almost felt even worse after the treatment than I did going in. It took two months to get my energy back.”
Silvers is now back at UNR continuing classes to get her degree in nutrition. She said it will take another six months before she stops feeling the effects of chemotherapy. She also has symptoms of her MS when she gets sick, but she is used to handling them and is thankful she no longer has to deal with them all the time.
“Now going forward I don’t have to be so scared of what is going to happen,” Silvers said. “Before I was worried about when the next relapse is going to be. What is it going to do? Am I going to end up in a wheelchair? I just don’t have those fears anymore. I know my MS is stopped and I know I never have to worry about if I’m going to be able to walk or take care of myself. I don’t feel like my future has been robbed of me anymore.”
Madeline Purdue can be reached at firstname.lastname@example.org and on Twitter @madelinepurdue.