So, teens are teens, right? The current crop of them live on Snapchat and love to film dance moves to post on TikTok. But while all teens face the tough work of growing up, not all also are forced to also deal with an even tougher diagnosis of pediatric multiple sclerosis (MS).
This chronic inflammatory condition is caused by an overactive immune system that attacks healthy tissue in the central nervous system (CNS). When it affects kids, MS is typically diagnosed around the age of 13 or 14, although the disease can also be found in elementary-school-age children, too, and, sometimes even in toddlers, according to the National MS Society. Symptoms of MS include vision problems, cognitive challenges, loss of mobility and balance, and extreme fatigue. Pediatric MS is a rare condition, with just 8,000 to 10,000 kids under 18 in the U.S. currently navigating the disease.
There are many misperceptions about life with MS—at any age—so we asked six amazingly resilient teenagers around the country to share their stories about tackling it as young people as they prepare to take on the world.
Meet Our Teen Panel:
Sammy Gold, 15, was diagnosed when she was 14 after she experienced symptoms such as double vision, muscle weakness, and the inability to swallow.
Michael Musangu, 17, was diagnosed in third grade at age eight after he experienced double vision, numbness, and balance/coordination issues.
Isela Zepeda, 15, was diagnosed just over a year ago when she experienced dramatic changes in her vision as well as numbness in her leg.
Shaye Eggenberger, 16, was diagnosed at 13 after experiencing vision issues, including flashes of light, plus dizziness, tingling in her foot, and balance issues.
Gracie Hull, 16, was diagnosed at 14 after experiencing numbness and tingling in her hands and feet and, months later, optic neuritis.
Grace Nelson, 18, learned she had MS after losing her eyesight in her left eye when she was 14. While her eyesight came back, her vision fluctuates a lot.
We asked each teen a series of questions. Here’s what they have to say about MS, how they approach their diagnosis, and what their dreams are for the future.
Q: What did it feel like to get your MS diagnosis?
Gold: “My initial symptoms were very minor but when they worsened, I went to the ER, and it all went downhill from there. It was really dramatic. I didn’t know MS was in the cards. When I was in the hospital, the diagnosis definitely scared me. But now I know it’s just one part of my life.”
Musangu: “Honestly, considering I was eight when I got diagnosed, I don’t really remember how I reacted. I was in third grade when I suddenly couldn’t walk, and I was seeing double. A diagnosis was definitely more of a relief. I remember thinking that when they were able to put a name to what I was going through. I felt this feeling of, ‘Oh, okay … there’s a treatment for this. I’m not scared.’”
Zepeda: “For me, it was a little bit of both. After a while of not being able to see and experiencing numbness in my left leg, it was nice to have answers. But finding out that this is lifelong and that treatments will make it better, but it won’t go away—that was scary.”
Nelson: “I was scared. After I lost vision completely in my left eye, I spent 19 and a half hours in the emergency room. I didn’t know what MS was, and no one really took the time to explain it to me until my family and I researched it.”
Q: What’s been the toughest adjustment for you with school or your sports life?
Gold: “All my muscle groups were knocked out [at] my initial diagnosis, so I was in the hospital and needed a tracheostomy and a gastrostomy tube. I was in the ICU for a month before I was transferred to another floor and then to rehab. So about two months of in-hospital recovery. I couldn’t breathe on my own, and I couldn’t walk for a while. I wasn’t paralyzed, per se, but I was very weak.
I can breathe on my own now, but I had to give up Tae Kwon Do, which was tough—I was a black belt before this happened. I also lost a lot of time away from school, so that’s been tough, too. My walking today is not beautiful but it’s functional—I’m walking on my own, and I can walk a reasonable distance, maybe a quarter of a mile, without needing a break. I still work with my physical therapist to continue getting better.”
Eggenberger: “I’m hard on myself academically, and I get stressed out easily. When I was first diagnosed, I would forget a lot of stuff, I couldn’t concentrate, and I was getting tired in school. I’ve gotten used to it now and have gotten into a mindset that this is something I’m going to have to live with.
As for sports, I had to quit ice hockey. I played on a travel team for five years and was planning on doing that until college. My body can’t do that anymore.”
Hull: “I’m not involved in sports, but I’ve been hospitalized three times. It’s challenging academically when I get back to school because of the steroids and medications they give me when I get MRIs—I feel like it changes my brain function.
I get anxious being in an enclosed space for so long, so they give me lorazepam to make me drowsy, which helps. But the steroids and other meds make my body much weaker, and being in a hospital bed for almost a week can make normal, everyday life feel very overwhelming once I go back."
Nelson: “At school it was difficult to get to class after gym because I’d be overheated, and my vision would go. My biggest problem is the way the heat affects me. When I get too hot, my vision [worsens], and I start to see blue and white dots. As for sports, I had to quit soccer—mostly because of how heat affects me.”
Q: What’s your treatment like?
Musangu: “I used to be on shots every day but now I’m doing an infusion every six months. I just did it two days ago! I go to a clinic and sit there all day. The biggest side effect is that I get really tired afterwards. I spend the next day feeling terrible, but that’s it.”
Zepeda: “So far I’ve only gotten two infusions and my next treatment is in July. I have a fear of needles, but that’s gotten better since I’ve been in the hospital for an extended amount of time with an IV in my arm. Since my first shot, it has been helping. But I recently had a little flareup, and I’ve noticed that I lose my train of thought and space out often.”
Eggenberger: “I’m on Gilenya, an oral pill. I take it once a day to stop the lesions in my brain from flaring up. I haven’t experienced any side effects from it. I also have to get MRIs two or three times a year. [While adults with MS typically get scans every 2 to 5 years, more frequent imaging is often recommended for younger patients, according to a study published in Therapeutic Advances in Neurological Disorders.] The first time I had one I was so nervous, but I’ve definitely gotten used to them. Now I close my eye and take a nap.”
Hull: “I have MRIs, bloodwork, and infusions every six months. I don’t think it’s that bad. I still have to be careful about getting stressed out. I try to keep my stress down by listening to music, drawing, or going running, but if I’m stressed, I’ll wake up the next day to a floater in my eye which is a sign that I’m getting optic neuritis.”
Q: How does MS affect your social life?
Gold: “I haven’t started dating yet at all, but since I’ve started walking again, my first year of high school has actually been pretty normal—which is all I wanted! I’m lucky that I go to a small charter high school. There are only 100 kids in my grade, and I was in seventh and eighth grade with my classmates. They all know I have MS. They get it, and they’ve been really supportive.”
Musangu: “I’m really fortunate. I’ve seen people with MS who are in much worse condition, but I’m ambulatory. I can walk, and I can do everything. No one suspects I have MS unless I tell them. My friends know I have it, especially the ones from freshman year. That year, I had a relapse and was in the hospital. When I returned to school, I limped for half the year.”
Zepeda: “Hanging out with friends can be difficult because this is new for some of them. They want to treat me the same as they did before, but then they’re like, ‘Do we have to do anything different for you?’ I’m not any different than I was before—I’m still me. I started dating my boyfriend less than a month before I was diagnosed, and he’s really supportive. He’s always there for me. When I was in the hospital, he checked on me every day. He’s really sweet.”
Nelson: “At the beginning, right after I was diagnosed, it was difficult. I didn’t want to tell anyone I had MS, and I did lose a few friends. Their quote was, ‘I can’t deal with it,’ even though I was the one dealing with it. That has gotten better over time. My friends now are way more supportive. I know who my real friends are.”
Q: Can you share your worries—and your hopes—for the future?
Gold: “I get fatigued really easily, so I’m worried about being on my own at college, and I worry that it will be hard. My hope is to be totally self-sufficient like I was before, whether walking or just doing things on my own.”
Musangu: “Looking to the future, I worry that my MS will eventually get worse because that’s what happens. My hope is that there will be a wonder drug in the future. I’m planning to be a doctor, and I’d love to do research on that. I’m fascinated by neurology. I love studying it.”
Zepeda: “My worry is that my MS won’t necessarily get better. I’m also hoping that my flareups won’t be as bad as they are now. It really helps for me to talk to others with MS. I’m in a group that does two Zoom calls a week. We all laugh together and, when someone zones out, we don’t judge each other. It’s nice having people around your age who are going through what you’re going through and understand what’s going on.”
Eggenberger: “My worries are definitely what will I do when I don’t have my mom to help me go to my appointments or take my medicines. I’m nervous about doing that by myself. I’m of course hoping there’s a cure for MS—and I hope that we can spread awareness, and that other people understand more about MS.”
Hull: “The thing I’m most worried about is that I’m going to be a burden for my family, or that nobody wants to go to all of my appointments and pay all the bills, but somebody has to, and I’m not old enough to do that. I’m hopeful that maybe researchers can come up with an effective way to keep my flareups down.”
Nelson: “My worry is that there’s not going to be an MS cure, or that for some reason my diagnosis will get drastically more difficult or different. What do I hope for? Education to spike way up so that everyone knows about MS, and I [won’t] have to explain myself every time I go somewhere. I’m starting college in the fall, and I’m going to be a nurse. I hope I can do my part to help spread awareness.”
MRIs for Pediatric MS: Therapeutic Advances in Neurological Disorders. (2017.) "MRI in the assessment and monitoring of multiple sclerosis: an update on best practice." ncbi.nlm.nih.gov/pmc/articles/PMC5453402/