26th
February
2010
Living With Multiple Sclerosis…As A Teen
As someone who grew up with two close friends whose parents had Multiple Sclerosis, I was under the false impression that it was a disease that only affected adults. The truth is, this misconception can lead to misdiagnosis in both children and young adults, allowing their MS to go untreated for years. Sixteen-year-old Jaclyn Natoli from Cedar Grove, NJ is one of those rare cases. This cheerleading high-schooler has been battling MS since she was ten and teamed up with the Montel Williams Foundation, and the National MS Society to help raise awareness.
What exactly is MS? How does it effect you?
Multiple Sclerosis is an auto-immune disease that attacks your nervous system. My doctors explained it like this: picture a functioning lamp — you can easily turn it on and off and it works well. Then, one night a mouse gets in the lamp and chews up the wires (like MS on human nerves). You try and turn the lamp on but it won’t work, so you use duct tape to try and patch up the holes in the wire (which is essentially what the medicine does). The lamp will turn on, but doesn’t work as well as it did before. This is more or less what having MS is like — once you get the disease there are medicines that help stop the disease from spreading, but they can’t fix the nerve damage.
Now that I am diagnosed, I have to be more aware of what I can and can’t do. For instance, I used to love to play softball, but the heat really isn’t good for me. If you have MS, heat really slows you down and wears me out more than other people my age. The disease makes me extremely tired so it’s really hard to get up to go to school — but, so far this year I’ve only been late twice! Also, it’s harder for me to learn mathematical formulas, or to learn a new language just because it takes me longer than someone my age to understand it. Unfortunately because of my MS I now have cognitive issues.
When you were first diagnosed, what kinds of symptoms were you having?
I first started having symptoms when I was ten, during the summer going into fifth grade. I felt really tired and weak and I couldn’t really drink or eat and I had trouble swallowing. Also the entire left side of my face felt numb, I had massive headaches, slurred speech, and my balance was totally off, making walking really difficult. At one point, I also lost vision in my left eye but then later I had double vision.
What was your initial reaction when you were diagnosed?
Since I was so young I was confused by what MS was, I just thought I was sick with the flu and was sleeping a lot because it was summer. At the same time, I guess I was glad that the doctors knew what was wrong with me and they could help me get better.
How are you treating the disease?
When I was in the hospital when I was ten the doctors put me on steroids. It took them seven months to diagnose me and during that time I had to go to rehab to get my walking ability back. When I was on steroids I gained a lot of weight, which was kind of traumatic since I was starting at a new school. Nobody really understood what I was going through, and in the middle of all of this I fell and broke my back. So then I had to wear a back brace to school along with being heavier than normal because of the steroids.
Now I take an injection three times a week called Rebief, after which I have flu-like symptoms, which is common. I also have to go in annually for an MRI to see if I have any active MS lesions. The disease is stable for now, but in the past I’ve had three relapses.
I think there’s a common perception that this is a disease that only appears later in life. Is it relatively common for teens to develop it?
I have to agree with you on that one! When I tell most people that I have MS they look at me funny and are like, “No way, you’re too young!” But when I was first diagnosed, my mom called the MS Society in New Jersey and asked for advice and local kids and teenagers who also had the disease - but she was told there aren’t any, and asked if she was sure I had it. Only recently are people becoming more aware that children and teens can have MS, and I strongly believe that there should be more research on why children are getting it younger and younger.
In your opinion, what is the most important thing for people to understand about the disease?
That it can affect anyone at any age. Nobody is exempt. We don’t know why people get it, if it’s genetic or environmental, but there needs to be more funding and research to find out why and how people develop it.
Do you work with any organizations related to MS? Where can people go to learn more?
I’ve worked with the Montel Williams MS Foundation for the past five years, which helps fund MS research and raise public awareness. I’ve personally contributed time, effort, and money for fundraising, and I was even on the Montel Williams Show to share my story and tell all my friends I have the disease. It was a great experience because at that time, only my closest friends and family knew. I also volunteer with the National MS Society, and every year I do the MS walk to raise funds and awareness. This past summer I was a counselor in training at a camp sponsored for the National MS Society for children whose parents have MS or who have it themselves. It you want to learn more, check out MontelMs.org, or NationalMsSociety.org.
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I know March is the official start of spring, but let’s face it: It’s still waaay too chilly outside to break out my spring wardrobe anytime soon, which means we’re still in the dead of winter as far as I’m concerned. As we drag ourselves through the final weeks of biting winds and snow showers (at least here in NYC), Tennessee-based beauty emporium The Cosmetic Market wants to make it a lot easier. Staring on March 1st, they’re giving Teen Vogue readers an exclusive 20% discount off of purchases made on 
