How Teens with MS Face a Unique Set of Challenges
Women are more than twice as likely to develop Multiple Sclerosis as men. Multiple Sclerosis usually affects people between the ages of 20 and 50 years, and the average age of onset is approximately 34 years. Multiple Sclerosis can affect children and teens (pediatric MS).
I was 17 when I was diagnosed with Remitting-Relapsing Multiple Sclerosis (RRMS) in 1987. Back then MS was not very well known, and the Internet didn’t exist either, so no real way to research what MS is, other than taking the word of my Neurologist. I remember having symptoms as early as the age of 14. I was constantly tired, couldn’t keep up with my fellow students in gym class, running track. I slept a lot. My parents thought I was just being lazy. Because I was affected so early on in my life with MS, I knew I wanted to help others who are newly diagnosed with MS in whatever way I could. So I wrote a self-help book “Blue Fingers Brass Knuckles” full of diagrams, questions to ask your doctors, how to cope with the diagnosis through laughter, and the power of inspiration, faith, courage and love.
In today’s world, MS is a common household word and you can Google information about MS. However; unless you’re following a teen with MS on social media to know the unique set of challenges that comes with it, you won’t know until you experience it…and even then, you’re left wondering…is this MS or just me?
Emotional Issues Of Teens With MS
There are approximately 8,000 to 10,000 Americans who have been diagnosed with MS before their 18th birthday. Although pediatric MS cases are rare, some studies estimate that 2 to 5% of all people with MS had symptom onset as a teenager or even younger. The good news is that pediatric MS specialists say teens who begin MS therapies soon after their diagnosis rarely develop disabilities before their 20th birthday and can lead a relatively symptom-free life well into adulthood.
“There’s some evidence that people who get pediatric remitting-relapsing MS move to progressive MS slower than those who are diagnosed as adults,” says Tim Lotze, MD, associate professor of child neurology at Texas Children’s Hospital at the Baylor College of Medicine. “Maybe that’s because the “lucky” ones who are diagnosed earlier start on treatment sooner.”
But while teenagers may have fewer physical MS symptoms than adults, they can have more emotional or mental issues. Adolescence comes with all kinds of angst. Add in an MS diagnosis, and the stress can skyrocket. “You grow up fast when you’re diagnosed that young.” Here’s what I, other teens, their parents and healthcare providers have learned about living with MS as an adolescent.
Difficulty with Diagnosis In Children With MS
The number of children diagnosed with MS seems to be holding steady in recent years, although accurate data is lacking, says Brenda Banwell, MD, chief of the Division of Neurology at Children’s Hospital of Philadelphia and director of the hospitals Pediatric Multiple Sclerosis Clinic. But the awareness of pediatric MS has increased considerably among healthcare practitioners, meaning children are more likely to be diagnosed quicker.
There’s also a growing amount of research focusing on pediatric MS.
The Canadian Pediatric Demyelinating Disease Network has performed a comprehensive prospective analysis of children with a first attack of what may be MS and have published extensively on the clinical, biological and MRI features of MS in children.
Doctors and scientists affiliated with 18 clinical centers throughout the United States have formed the Network of Pediatric Multiple Sclerosis Centers to study the causes and treatment of pediatric MS. To learn more, visit usnpmsc.org.
These and other studies show that while MS symptoms are similar in teens and adults, teens may be more difficult to diagnose.
“Teenagers may have more vague symptoms like their back hurts, or they’re having headaches or migraines with blurry vision or they’re having trouble walking,” says Soe Mar, MD, director of the Pediatric Onset Demyelinating Diseases and Autoimmune Encephalitis Center at St. Louis Children’s Hospital at the Washington University School of Medicine. Couple those indeterminate symptoms with normal teenage stress and Dr. Mar says some clinicians may think a teen with MS is suffering from physical symptoms that are due to psychological trauma rather than MS.
Specific Teenage Symptoms Of Multiple Sclerosis
The onset of MS in children and youth is associated with a higher relapse rate and a higher volume of brain lesions, relative to early MS in adults. Pediatric MS occurs in the context of normal academic learning and during brain maturation. Of note, 30 to 40% of children with MS have a cognitive impairment, Dr. Banwell says. This impairment varies from mild to severe, and mainly involves executive functioning, such as multitasking, organization, attention skills, processing speed, and word finding.
About a third of teens with MS have emotional issues, such as depression or anxiety or combination of both. But this mirrors the general population of teenagers, so it can be difficult to tell if MS is the culprit for mood disorders or if it’s simply being a teenager. Either way, mental health is an important facet of care for youth with MS.
When I was diagnosed at 17, I was devastated. Thinking I had something like cancer that I would die from. I was an emotional wreck. It was affecting me in every facet of my life. And because we didn’t know much about MS back then, doctors didn’t realize that mental health is an important part of “health care” for me, so I was stuck working through these emotions by myself. That’s why I can’t emphasize enough how important is it to have partnerships with psychiatrists and psychologists for teens who have MS. These professionals can help teens and their parents sort out what’s causing depression or anxiety and how to best treat it.
Research shows that teenagers also tend to have more frequent relapses than adults, perhaps because they haven’t yet developed full nerve myelination, Dr. Lotze says. A 2014 study published in Multiple Sclerosis Related Disorders shows that children have 2.3 times more relapses than adults per year. The flip side is that children recover much better than adults from relapses,” Dr. Lotze says. “There seems to be fewer residual symptoms, maybe because myelin in children can repair faster. Or there could be something innate in the pediatric brain that can make new networks after an MS relapse.”
The Importance of Medications In Teens With M.S.
While MS therapies can reduce disease activity in teens, the key is persuading them to consistently take their medications. “A lot of teenagers don’t think they need medications after they recover from a relapse,” Dr. Mar says. Most teens think “I just want to be a normal kid and not have to take 20 pills a day or go in for my injections.”
Several high school students who were recently diagnosed with MS were interviewed on the importance of taking their MS medications and the response was amazing. One student says “it helped when her mom told her that MS was like having diabetes. Another student said, “If taking my medication will keep my MS symptoms away, I’m all for it…but I don’t like it.”
Early-stage Coping In Teens With MS
While an MS diagnosis can be devastating for anyone, it can be particularly difficult for teens and their families. Parents struggle to accept the diagnosis. “No one expects a child to be diagnosed with an adult disease,” Dr. Banwell says. One thing teenagers have going for them, though, is resilience. There are many documentaries, YouTube videos and programs on TV that tell stories of other teens with MS and how they overcame their fear. For example: there was an ESPN program on a female runner with MS. A boy who is an offensive lineman on his middle school and high school football teams approached his diagnosis like an athlete. He talked to a sports psychologist who told him that he only needed to focus on his MS for the five minutes a day he injected his medication. So, for 23 hours and 55 minutes, live life like you don’t have MS. Staying positive that MS won’t affect the rest of your life in a big way.
Freaked-out Parents Of Teens With MS
When my Mom and I walked into my Neurologists office and was told I have MS my Mom bawled for at least 20 minutes. We looked at each other with that Mother-Daughter look knowing we had to stick together and be there for one another. Each other is all we had. This is a typical reaction for any parent as they don’t want to hear that their child has been diagnosed with an incurable disorder.
Sometimes the parents can be more of an issue for a physician than the child, due to them reading about medical journal articles and studies about MS regarding what could happen to their child. It’s terrifying! “Teenagers have a sense of invulnerability, so their MS can fade into the background. That’s not the case for the parents.” Dr. Banwell said a colleague recently completed a study showing that the impact of a child’s diagnosis with MS is so substantial for parents that they can end up using more healthcare resources that their child.
I believe having a strong support system is key for helping parents cope with their child’s disease. There are many online as well as in-person support groups, such as: Pediatric Multiple Sclerosis Alliance Group on Facebook, myself The MS Wellness Coach for natural approaches to healing and Families Fighting Against MS.com and National Multiple Sclerosis Society for United States, and MS Society UK, MS Australia.org. When you have a child, who has such a serious disease, you must have a strong support team. You cannot do this by yourself. Connecting with other parents of children in similar situations to ask questions to, and get support from, is invaluable.
While parental stress about their teens MS diagnosis is understandable, it can create additional emotional issues for the child. This is all happening while kids are at the age of trying to get independence from their parents. Teens tend to avoid talking to their parents about their disease because they don’t want to worry them. One teen said “I look like a different person when I relapse. I look so sick, and I know that upsets my parents. I would talk to my Mom about it, but I don’t want to make her even more upset,” Napier says. “My Dad calls me constantly to see how I’m feeling. It breaks my heart to see how worried they are. I wish there was a way to let them know I’m going to be OK.”
Teenagers can also hide their feelings for other reasons. Many blame themselves when diagnosed with MS. “I was getting all this attention from my Mom because of my symptoms, and frankly I was enjoying it.” After the symptoms subsided, the initial attention from my Mom went away. I started wishing that something else would happen again so I would get more attention.” It’s sad, but true I felt this way. And then, I found out I had MS. I felt like it was my fault even though deep down I knew it wasn’t. It can take several months to stop feeling devastated that they “brought the disease upon themselves” and to admit those feelings to their family and friends. Dr. Lotze says a key to breaking through these types of communication barriers is for parents to “not hide anything from the kid from day one. Parents need to make a plan on how to talk to their son or daughter.” A therapist can also help the whole family, including anxious or resentful siblings, open lines of communication.
Family relationships aren’t the only ones that suffer when teens are diagnosed with MS. Teens can face misunderstanding or even bullying about their disease. Most teens don’t want to tell their classmates about their MS diagnoses because they don’t want to be treated differently, or that rumors would be spread. They don’t want to be labeled “teachers’ pet” because of being allowed to turn in assignments late or eating lunch in the nurse’s office to rest. However; if you don’t face the truth by telling your story to stop the rumors, people will continue to say what they are going to say without knowing the truth. The best way most teens find is helpful is to make a video so the entire school would know you have MS. You’re not looking for sympathy, you’re looking for support. Upload it to your YouTube channel, then post it on your social media. Word spreads. You can also ask the principal if they can post a link to your video for the school to see. By telling your story, the gossiping, the whispers and the bullying will help stop this and help you make friends. MS is a lonely disease, so get out there and tell your story. You need a support system in ever facet of your life.
Learning How to Be Different
It’s OK to not be OK. Being different from classmates is hard…. missing out on being excited to have your crush take you to homecoming or attending school football games with your friends. Keeping a positive mindset makes all the difference in the world, it will keep you moving forward, climbing up this hill called life, and MS is just one more thing in your backpack to make you stronger. Perhaps being diagnosed with MS has sparked an interest to be a neurologist specializing in pediatric MS. Or being an MS advocate helping others with their meal plans and workouts. This can include becoming a health and wellness coach, specializing in helping others with MS to manage their symptoms naturally. By now, you can see the blessings of being diagnosed with MS as a teenager. You can show others that you can get through anything.
The MS Wellness Coach
Hi, I’m Jen Martin a Master Certified Wellness Coach, specializing in helping women with MS to combat fatigue, increase energy levels and improve their overallhealth naturally, so that they can live life with vitality and abundance. On Facebook, I’m known as The MS Wellness Coach – empowering those living with MS and other auto-immune disorders how to manage their symptoms naturally.