More than MS

On a warm summer day, junior Izzy Villanueva rolled over on her fluffy white comforter and groggily looked around her room with light pink walls and beige carpet, she glanced quickly at her beloved blue lava lamp. She then started to realize her leg was asleep. She massaged her leg trying to wake it up. An hour went by and nothing changed.

Days went by, then a week went by. Her leg was still numb.

“I had never had numbness or anything like that but one morning the summer after freshman year I woke up and my leg felt all weird and numb I thought it was sleep,” Villanueva said. “But it just didn’t wake up. It just got worse over the week, I would walk to the pier and back and my toe started bleeding because I keep stubbing it since I couldn’t pick it up completely. So finally, I was like ‘Um mom my leg has been asleep for like a week’ so then we went to the doctor and found out what was wrong.”

What she was about to learn would change her life.

“I remember that when walking into the doctors, I had to hold the wall as I walked, I was so weak,”  Villanueva said. “I then had to take a bunch of muscle movement tests and I was failing all of them. But my doctor seemed calm, so I honestly wasn’t too scared. But then my doctor told me I had multiple sclerosis. I didn’t know what it was, but my mom started crying. That’s when I started to think ‘OK, what is this?’”

Multiple sclerosis (MS) is a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord.

“MS is a disease that affects the central nervous system (the brain and spinal cord) through demyelination,” physical therapist Crystal Frazee said. “It affects every individual in very different ways. It may affect movement, cognition, alter sensation, cause fatigue, and may or may not be the cause of pain. Emotional stress and heat tend to exacerbate symptoms.”

Kim Harmon, Villanueva’s mom, knew what the diagnosis meant.

“When I found out she had MS, I was so devastated for her at that moment,” Harmon said. “It’s an unpredictable disease so there was all sorts of thoughts running through my head, like how to get the best care possible and also making sure she has the best doctor she can have since many neuropsychologists don’t specialize in treating MS.”

At first after discovering Villanueva had MS things only got worse before she got the have right treatment.

“I have to take three injections a week and also take two pills for numbness since that’s my biggest symptom,” Villanueva said. “I had a different doctor that gave me an injection every day and I just got worse and worse. Then I went to this specialized doctor and he told me to change my diet get off bread and stuff.”

Harmon also saw how challenging MS can be when you aren’t taking the correct medication.

“It was more unpredictable for Izzy until we got her better medication,” Harmon said. “We were in and out of the hospital that was stressful on her as well as me. Every time we went into the hospital, I wasn’t sure what was gonna happen.”

Often, MS is an illness that is suffered in silence.

“It is a sickness you can’t see,” Villanueva said. “I could be feeling very weird and extremely tired because of MS and no one would know. But I like that no one treats me differently because of it. I wouldn’t want people to look at me and be like ‘Oh that’s the girl with MS’ or ‘I feel bad for her’ so I don’t get special attention, but I like that.”

Hamon agrees even though MS isn’t something you can see it is something that Villanueva fights through every single day.

“I thank God she is doing well right now but it is an everyday struggle,” Harmon said. “People may look at her and think well she doesn’t look like she has a disease but she has to struggle through it everyday.”

One of the scariest aspects of MS is that since it is a progressive disease it’s symptoms only get stronger and more difficult with time.

“MS is supposed to get worse with age,” Villanueva said. “It is different for everyone, though some get it bad when younger while others don’t get it until later in life. Also, some get it worse depending on the season or amount of stress they’re under. If I don’t a lot of sleep and I am stressed out with that combination then all a sudden it will get worse.”

With MS being unobvious and not always active it is important to ask the person with MS what they are going through at the moment.

“I would advise a student to know that symptoms can vary day to day or month to month in some cases,” Frazee said. “In others, there are very few active symptoms. When dealing with another student it is important to ask them what they experience to better understand what living with MS is like for them and not to make assumptions.”

Despite all the challenges that MS presents, Villanueva hasn’t let it discourage her. Instead, she tries to look past the fear and make changes in her life that help with maintaining MS.

“I was very afraid at first when I learned I had MS, but I have been reading a lot of books about it understanding it more,” Villanueva said. “If you eat really healthy, and don’t eat any bread or processed food basically it just goes away. I have been trying to change how I eat a little I mean I love food so I haven’t totally changed my diet. Anyway, when I got my last MRI my lesions got smaller that like almost never happens I couldn’t believe it. I am so lucky.”