Teens with MS Face Unique Set of Challenges

Teens with MS Face Unique Set of Challenges

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.”

teenagers with multiple sclerosis deal with challenges

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.

Overcompensating Teenagers

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.

School Relationships

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.

Healthy – What Does Healthy Mean?

what does healthy mean - the world of health

What does Healthy mean?

Healthy means having good health. Is the opposite of sick, but also can mean “doing

well” in a general sense. Each of us strive to be healthy.

 

But many of us have illnesses, chronic disease, auto-immune disorders or just

symptoms that appear out of nowhere and don’t know where they came from. So, you

call your Dr. to evaluate what’s going on and he/she prescribes you medication to treat

the “symptom”. Not considering what is causing the symptom in the first place.  And of

course, we all know there are side effects to medications, which in some cases can be

worse than the actual symptom itself. 

 

The Wheel of Life; Wellness 360

Wellness 360 is a Holistic perspective.  Each of the tabs on the wheel interconnect

between all parts of ourselves. Each person has unique circumstances and needs.

Creating balance by making small changes – when we make changes in one area of our

life, we often notice it changes other areas….interconnected.

healthy what does healthy mean the wheel of life

In considering your Core foods (inner layer) and what areas might be out of balance, you

may find that there are many things affecting your imbalance.  It can be overwhelming

to look at all the areas where you don’t feel that you are achieving exactly what you want

to or realizing that each area has some percentage of “unfulfillment”. 

 

The Wheel of Life is a way to take a closer look at the whole picture, to really drill

down into what specific things are in or out of balance. 

 

The Inner Wheel

Represents activities and things that affect you DIRECTLY. The food you take in or the

fresh air you breathe.

Water

 Sunshine

 Air

 Food

 Movement

 Sleep

 

The Outer Wheel

Consists of indirect things that affect a person’s health and well-being.

Relationships

 Careers

 Finances

 Mindset

 Spirituality

 Purpose

Let’s take a closer look at the inner layers (CORE) to see how they directly affect us.

 

healthy what does healthy mean to you the world of health

Wellness 360 Food

Most conversations about taking good care of your body includes the emphasis on the

food you eat. At YOU Wellness, we know that our nutrition is a significant foundational

part of our wellness practice. healthy eating is crucial if we want to feel and look the

best we possibly can.

 

Talking about the element of Food is important when it comes to wellness for many

reasons. First, of course, is that nutrition is one of the hottest topics when it comes to

being healthy.

 

What we eat directly impacts how we look, how we feel, and how we do a lot of things.

It’s also one of the most confusing and ever-changing elements. When you use the

Wellness 360-wheel, Food becomes an element that is simpler than you think.

There are several aspects that make up the element of Wellness 360 Food.

 

These include things like:

 

The specific types of foods that we put into our mouths.

 The amount and quality of the food.

 How we eat that food, such as in a hurry or at a peaceful, slow pace.

 Noticing whether the food gives us energy or makes us feel tired.

 Checking in to see whether the food feels nourishing.

 Paying attention to whether the food makes us feel good after eating it.

 

Healthy Eating Is as Unique as You Are

Every person on the planet has specific biochemistry, environment, and lifestyle. When

combined, we are each quite unique. That means that each diet and nutrition plan out

there isn’t good for every person. It’s not a one diet-fits all. The food you eat needs to be

as unique as you are. Each person has specific individual needs. There are many factors

that influence which foods are best for you as an individual.

 

Wellness 360 Rest

Generally, it’s hard to improve your physical wellness for life when other parts of your

life might be under stress or unhealthy  One of the elements that can support you to gain

perspective on your life and see the connections between all the Wellness 360 elements

is the element of Rest.

 

The first reason it’s so important is that rest and sleep affect us on so many levels. When

we initially think of rest, we tend to think of sleep. And sleep is one of the biggest health

challenges that people in our culture face today.

 

Rest as a Wellness 360 element encompasses more than sleep, of course. The overall

American and western attitude toward rest is to try to minimize it as much as possible.

We put value on getting more done, being more productive, and being more efficient.

But we’ve lost our value for rest in our culture. Our quality and quantity of rest has

decreased, causing many problems ranging from minor health issues to major

challenges.

 

But when we’re talking about rest, we mean more than just sleep. Rest is a bigger idea

than that. It’s all about valuing our self-care practices. Rest also includes our downtime

and the ways that we intentionally slow down. It’s all about taking time to enjoy a

hobby, relaxing entertainment, or restful activities. Rest is about the things we can do to

release stress, calm our bodies, and power down our minds for a while.

 

Pay Attention to Your Energy Levels

You might be one of the lucky ones who sleep well and then wake up energized and

ready to start your day. Or you might wake up dragging from the first moment your feet

hit the floor. Notice your energy levels at the beginning of the day, but also pay close

attention to how they change throughout the day.

 

Do you feel exhausted by lunchtime? Are you loading up on caffeine just to get through

the day? Are you dragging all day long and then laying in bed wide awake at night? Keep

a journal to track your energy levels, then compare it to other activities and the food

you’re eating to discover patterns and correlations.

 

Check in With the Wellness 360 Wheel

Oftentimes, our quality of rest is directly affected by other aspects of our lives. If you’re

struggling through a bad patch with your partner, it might be really hard to sleep at

night. Lots of elements can be making it hard to go to sleep and to stay asleep. They can

also make us feel less motivated to engage in self-care, right during a time when we

might need it most.

 

Get Better Rest and Sleep

Taking good care of yourself is essential to achieving wellness. This includes focusing on

resting more, giving yourself better self-care, and ensuring that your sleep each nigh is

restful.

 

Wellness 360 Water

Water is an incredibly important part of your wellness routine and something to

consider when improving your overall health. There are many ways to look at Water and

ways to consider how it impacts our well-being.

 

Importance of Water for Health

One of the reasons we should talk about water is the fact that over half of the human

body is made of water. It’s an important element in our organs, our blood, and even our

bones. Water’s job in our bodies ranges from insulating our organs to lubricating our

joints, to forming the building blocks of cells.

 

Water is also an important part of the elimination system, carrying waste and toxins out

of our bodies. Water for health is always important to create a healthier body and a

more balanced wellness practice.

 

The simplest understanding of water for health is that we take in water through drinking

and eating. When we drink water, we are contributing a crucial element to our body for

its survival. We want to continually replenish the water in our bodies so it can support

our organs, joints and cells.

 

Without water, we become dehydrated and when that happens, our bodies can’t

function properly. Our cells become sluggish and too dry to perform their functions

optimally. We depend on water to live, way down to the cellular level. The quality of

water we’re drinking also greatly affects us. Dehydration can have a negative impact on

your wellness, so it’s important to balance water for health and well-being.

 

Here are a few ways you can get started with balancing your water element.

 

1. Keep track of your water intake.

Write down when you drink water and how much you’re taking in. Pay attention

to when you feel thirsty and make note of it.

 

2. Pay attention to the other beverages you’re drinking.

If you’re a big coffee drinker, notice what it does to your thirst and bathroom

visits. Caffeine tends to trick the body into eliminating water, which will leave you

dehydrated. Also, keep a close eye on other things you drink, such as sodas, diet sodas, teas,

juices and alcohol. Some of these liquids are hydrating and others are

dehydrating. Some of them will wreak havoc with your water fluid balance. Water

is always the best thing to drink for your health.

 

Wellness 360 Sun

It’s vitally important to get about 10 minutes of natural midday sunlight every single day

– and it’s crucial in the winter. This is true even if it’s overcast outside. We spend a

whopping 90% of our time indoors – and that’s where everyone else’s germs are

multiplying! Sunlight boosts the immune system by converting cholesterol to vitamin D.

It stimulates the thyroid gland; ensures sound sleep by triggering melatonin production at

night; and boosts the mood. Get outside for a walk and get your vitamin D for the day.

A minimum of 20 minutes per day when the sun is high in the sky is ideal for optimum

vitamin D intake. You’ll also feel more energized once you soak up some sunlight.

 

Wellness 360 Air

One of the important elements of Wellness 360 is Air. At the most basic level, our body

is alive because of the air we breathe in. It’s literally our life force and the element that

makes it possible for all the cells in our body to thrive.

The air you breathe contains a lot of oxygen, which is an essential element for life. Every

one of your cells needs it in order to carry out their functions and keep you moving.

When you breathe in, air moves into your lungs, then oxygen travels to all the places it

needs to go through the bloodstream.

 

Understanding the Air Element

The element of Air focuses on the actual air coming into our lungs when we breathe in.

Since air is such a vital part of our life force, it’s important to consider the quality as it

will affect our physical health. Improving our wellness isn’t complete until we’ve

addressed the ways in which we take in air.

 

Air as Nature and Outdoors

As a Wellness 360 element, Air also represents the air outside and nature. This includes

our environment and how we treat it. That includes how the environment impacts our

air quality, which then affects our health. An environment that is treated poorly and has

become unhealthy will have negative effects on our health. On the flip side, when we

lovingly care for our environments, it can have a hugely positive effect on our mental

and physical health.

 

When we are exposed to air pollution for any length of time, it can harm our respiratory

system, lungs, and cardiovascular system (our heart). Long exposures to pollution can

lead to serious diseases and health effects that can be devastating.

 

Air as Indoor Environment

Your indoor environment is also important. The air quality of our homes has a huge

impact on the air we breathe in and our overall physical health. Our homes are our safe

havens, away from the outdoor environments that surround us. The quality of the air we

take in within our homes is an important consideration when balancing wellness and

health.

 

Air as Breath

While the quality of the air you breathe in is super important, it’s also crucial to consider

how you are doing the physical breathing.

 

Most people breathe in using just their upper chest, taking in very short and shallow

breaths. For ultimate health, we need to be breathing in deeper ways. Air should move

in your nose, down into your lungs, filling up so fully that your belly rises. It should

then make its way back out, leaving through your nose or mouth fully. Intentional

breathing brings in the most efficient levels of oxygen, bringing vitality and true

oxygenation to every cell in the body.

 

Learning how to breathe properly impacts our well-being at a deep level. Deep breathing

helps to calm our nervous system, and slower breathing can de-escalate panic and

anxiety.

 

Wellness 360 Body

Wellness 360 is a holistic philosophy that supports the integration of all areas of our

well-being. But it’s not just one-dimensional. It’s a three-dimensional, layered system

that supports the whole person. Each layer of Wellness 360 can be used to change your

health and life on different levels. Going beyond just our external health, Wellness 360

takes us to the inner layer of ourselves and can help us define and evolve our whole

being.

 

On the first layer – the physical, external layer, Wellness 360 continues to provide a

holistic framework for balancing our lives in the 12 elements of life we originally created.

On the second layer – the internal, inner layer, Wellness 360 goes to the next level by

integrating both the external and internal. We are not just physical bodies; we have an

internal world that plays a huge role with our health. What’s happening on the inside is

often as important as what is happening on the outside.

 

And finally, on the third layer – the symbolic, more “energetic” layer or that hidden

layer you can’t see – Wellness 360 provides greater meaning to the areas of our life that

are out of balance and provides a deeper understanding of our individual journeys.

I encourage you to really look at the Wellness 360 wheel and see what areas are out of

balance. Then rate them from 1-10. 1 being the lowest, 10 being the highest. If you rate

any areas at 7 or below then those areas are the main and biggest that need to be focused

on and fixed. As they are interconnected with other areas of your life and is not whole.  

 

Empowering You To Be More Healthy

I am a Master Certified Holistic Health and Wellness Coach, founder of YOU Wellness

and creator of The MS Energy Blueprint. On Facebook, I’m known as The MS Wellness

Coach. I specialize in empowering women with MS to combat fatigue and increase energy

levels naturally so that you can transform from existing to living life with vitality and

abundance.I am also an author of Blue Fingers Brass Knuckles – self-help book for those newly

diagnosed with MS.

 

If you would like to learn how to improve your overall health and manage your MS

symptoms naturally, click HERE to schedule your FREE strategy session with me!