Putting a Human Face on Multiple Sclerosis

There is a disease that is chronic, progressive and has changed the lives of millions of lives around the globe. The condition is called multiple sclerosis (MS), and it is a global life-threatening disease that strikes humans of all ages and religions. It is too easy to sit back and think that you or your family are safe from MS, but that would be hiding your head in the sand.

The goal of this article is to explain the impact that multiple sclerosis has on people and to give a human face to a disease that researchers are working hard to eradicate.

What is Multiple Sclerosis?

 The short answer to the question of “what is MS” is that it is an autoimmune disorder where the body’s immune system starts to attack the protective covering of the nerve cells in the brain and spinal cord.

There are two types of multiple sclerosis, relapsing-remitting MS (RMS) and secondary progressive MS (SPMS) that are closely related.

People with relapsing-remitting MS experience periods of symptoms (relapses) followed by quiet periods where the disease appears to be in remission. The remission stage can last from months to years.

According to the Mayo Clinic, 60-70% of people with relapsing-remitting MS will eventually develop a steady progression of symptoms that may not include remissions. This fact means they have formed secondary-progressive MS.

A good definition of secondary progressive MS (SPMS) is found on the website run by the MS Society located in the United Kingdom. It reads, “Secondary progressive MS (SPMS) is a stage of MS which comes after relapsing-remitting MS for many people. With this type of MS, your disability gets steadily worse. You’re no longer likely to have relapses when your symptoms get worse but then get better. “

The conclusions reached by the definition of SPMS is that once you are found to live with the remitting-relapsing form will eventually find they are living with the more severe secondary progressive form of MS.

The Possible Causes for Multiple Sclerosis to Form

The exact cause of multiple sclerosis is unknown. While genetics has been found to play a role, there has been observed a correlation between Vitamin D deficiency and the development of the disease. Caucasians living in the northern parts of the planet and farthest from the equator where there is less sunlight have the highest incidents of MS. This possible link is because vitamin D is not a naturally occurring substance and must be manufactured in the human body using a chemical reaction in our skin when exposed to sunlight.

People in the northern regions of the world get less sunlight which means they are unable to make sufficient vitamin D. This combination of factors may be the reason that people in these areas of the globe have a higher incidence of developing multiple sclerosis.

Importantly, multiple sclerosis is found all over the world including those areas closer to the equator such as India and Africa.

Who May Develop Multiple Sclerosis?  

If you are saying to yourself that you’ve heard of MS but don’t know what it is, you are not alone. However, there is a long list of famous people who are being treated for this enigmatic disorder. The list includes people like JK Rowling the creator of Harry Potter, Jack Osbourne, Montel Williams, and country western star Clay Walker.

An estimated 2.3 million people around the world live with this life-altering disorder. MS can strike people of any age but mainly affects young adults between the ages of 20 and 35 years.

The disease attacks a disproportionate number of women over men with women being twice as likely to develop the disease. People who are smokers also have a much higher likelihood of being diagnosed with MS.

If a parent has multiple sclerosis, their children have a 5-10% higher chance than the world population of developing the disease. The statistical likelihood of children of parents who live with MS risk is 1 in 40 and 1 in 750 and for those who do not.

The most important things to remember about who gets multiple sclerosis are that they are people just like you and have careers, dreams, and hopes.

Treatments Options for Multiple Sclerosis

 Although research continues, there is currently no cure for multiple sclerosis. The treatments that are available include a range of different method that slows the progression of the disease and helps those living with it to manage their symptoms.

The first methods of treatment are those aimed at modifying the progression of the disease. They include medications, physical therapy, and occupational therapy.

The utilization of powerful medications is an integral part of the treatment for multiple sclerosis. However, these drugs carry with them many health risks. Choosing the correct medication is vital to lessen the dangers ranging from mild ones that cause flu-like symptoms to severe side-effects like viral diseases of the brain.

Women who are of child-bearing age will find that the consumption of the strong medications for MS is contraindicated for pregnancy.

The Daunting Problem of the Cost of Treatment

The cost of medications is a considerable problem.

According to an article published by NPR prescription medications for multiple sclerosis are costly. The report indicates that a study performed at Oregon State University found that MS drugs presently cost on average $60,000 per year.

The focus of medications for MS is to alleviate the formation of new injuries to the myelin covering to the nerve cells that communicate information from the brain to the rest of the body.

The Importance of Myelin

 Treatment options to prevent further damage to the myelin consists mainly of potent drugs to arrest the formation of damage to it.

Myelin is defined on dictionary.com as “a soft, white, fatty material in the membrane of Schwann cells and certain neurological cells.”

In other words, myelin acts like the insulation that you might find around the power cord to an appliance in your home.

The insulation on a wire keeps the electricity flowing well so that the appliance will work. When this insulation on the cord becomes damaged and the wiring exposed, the appliance will no longer work because the electrical current has ceased.

Since the electrical signal cannot reach the appliance correctly, the device becomes unusable.

The same can be said of myelin. If the myelin coating around the wiring of the brain cells and spinal cord becomes damaged from multiple sclerosis, the brain cannot send signals to the body.

This lack of communication from the brain means the signals that tell the legs and other parts of the body are diminished or stop altogether.

The Human Equation of Multiple Sclerosis

 It is all too easy to look at the facts and figures of multiple sclerosis and forget that the disorder is not a disease that attacks robots, nor is it rare. MS strikes 110-140 of every 100,000 people globally.

Stated more bluntly, multiple sclerosis is a human disease.

The Patient Next Door compiled data given by members of our online family to help us understand the human equation of multiple sclerosis. We wish to share with you what we found to help you understand how multiple sclerosis affects people just like you.

Employment After the Diagnosis of Multiple Sclerosis  

 Our data confirmed that around 50% of the people surveyed worked after receiving their diagnosis of MS. The other half of our respondents reported they cannot work which is understandable. The disease causes severe neurological symptoms that can affect a person’s ability to perform well on the job.

Of the 50% who continue to work, research shows they think of changing careers so that they can continue employment. Some of these folks try to maintain the job they had before diagnosis, but the physical limitations may impede this decision.

Unfortunately, many are forced to declare a disability and choose to retire from work altogether.

The Daily Struggles of People Diagnosed with MS

The struggles facing people who have multiple sclerosis are daunting. Our survey found that the struggles include overwhelming fatigue, mobility issues, memory problems, and depression.

Fatigue. Fatigue is not tiredness. Instead, it is an unrelenting exhaustion that is profound and isn’t relieved by rest. It is a constant state of weariness bringing with it lowered energy, motivation, and concentration.

Fatigue can be so severe that it will impact the emotional and psychological well-being of someone who is experiencing it.

People in our data indicated fatigue as their greatest challenge. One can only imagine being so weary that you cannot think or interact with your family and how this impacts their lives.

Mobility Issues. The issues surrounding the ability to get about for people who have MS are many. At first, the disease causes an unsteady gate making falls a considerable hazard. However, as the brain grows increasingly unable to communicate with the lower body, mobility devices become necessary. These include walkers and eventually wheelchairs.

The people included in our data stated that one of their greatest fears was losing the ability to walk and finding it necessary to use a wheelchair.

Staying as active as possible and using physical therapy to improve muscle tone can help slow down the inevitability of using a wheelchair.

Memory Problems. People who have been freshly diagnosis with multiple sclerosis have a 5-10% chance of experiencing problems with memory. Over time about half will experience poor focus, slowed thinking or a fuzzy memory.

Signs of these memory problems from MS are struggling with finding the right words, forgetting things that need done, and having trouble concentrating.

While these signs are alarming, MS doesn’t impact intelligence or long-term memory, nor will it change the ability to carry on a conversation.

Despite these facts, the people in our data stated that one of their greatest fears was forgetting their loved ones as happens with Alzheimer’s Disease.

Depression. Depression is one of the most common symptoms reported by those who have been diagnosed with MS. Studies show that severe depression (clinical depression) is more prevalent in people living with MS than any other demographic group.

Depression is also a big problem for people suffering from other types of disorders where inflammation is a significant contributing factor. Because of this, it is believed that since MS is an inflammatory immune condition, this fact is the primary cause of the depression experienced with the disease.

The dangers that accompany depression are many with the most severe being death by suicide.

According to a study published in the Multiple Sclerosis Journal people living with MS are twice as likely to die by suicide as the general population. Those at the highest risk of dying are men, even though men are much less likely to be diagnosed than women.

Depression, social isolation and substance abuse are highly correlated with deaths by suicide occurring.

Our data gathered from our Patient Next Door family members living with multiple sclerosis show why suicide is such a problem among this demographic group.

They stated that they found it exceedingly difficult to accept the diagnosis of MS and even years after beginning treatment still find it hard to shoulder.

They describe feeling saddened and frightened about what their diagnosis would mean to their lives. These impacts include the knowledge that the diagnosis will bring changes in their relationships, work, and an overall change in how they go about the task of living.

Fears Expressed by Those Living with MS

 The people in our data named some other repercussions to their lives, including their greatest fears. Besides the obvious things like losing the ability to walk, they fear becoming dependent on others and becoming severely disabled.

These fears are very real as a person living with the diagnosis of multiple sclerosis faces a lifetime of increasing need to turn to caregivers for their physical support. The effects of the disease go beyond their legs as their arms and hands are also impacted leaving them unable to hold and operate many devices or even a hairbrush.

The Fear of Dying from Multiple Sclerosis

 While multiple sclerosis is not fatal, it can contribute to premature death among those living with it. These complications include pneumonia, infections, falls, and diabetes due to obesity brought on by the lowered ability to exercise.

The current medications used to treat MS include chemotherapy with drugs usually used in the treatment of cancer. These potent drugs carry their own risks as they are toxins used to kill white blood cells that are necessary to fight infection. If this reaction gets out of control, a form of leukemia can result and since people living with MS already have a compromised immune system resulting infections can be fatal.

Putting a Human Face on Multiple Sclerosis

  •  Multiple sclerosis impacts real people with real lives. They are from all walks of life, all shapes, and sizes and from all over the globe. The people in our data gave us a small glimpse of what living with MS was like when and their answers moved us.
  • Horrible
  • Limiting
  • Sucks
  • Exhausting
  • Challenging
  • Life-changing
  • Stressful
  • Painful
  • Sad

As you can see, people who live with multiple sclerosis in their lives face heart-wrenching hardships every day, all day, 365 days per year.

These brave souls also expressed on our survey the same hopes and dreams that any human being who found themselves facing a life-altering and fatal disease would feel.

These hopes and dreams include living health and independent again, not being in a wheelchair and for a cure to be found soon.

The bottom line? Multiple sclerosis isn’t a disease that affects a species from another planet; it is a disease that completely alters the lives of human beings just like you right here on planet earth.

While there is no cure yet, research has made breathtaking progress in the past year, and the understanding of the cause and treatment are getting better.

It is with sincere hope in our hearts that the Patient Next Door support team sends our hope that a cure will be found soon to end the suffering in the next few years.

 

Places You Can Find Help

If you or someone you love has been diagnosed with multiple sclerosis, please don’t suffer alone. Reaching out to one of the many organizations listed below can and will help you deal with the changes that will be coming to your life.

Help in the United States 

The National Multiple Sclerosis Society has a financial assistance program to help guide and support you in finding ways to pay for your prescriptions.

Give them a call at 1-800-344-4867 to speak to an MS Navigator, or visit their website at www.nmss.org.

Many pharmaceutical companies have financial assistance programs and are ready to speak with you about your specific needs.

The National Multiple Sclerosis Society offers a page of information about each company, and where you can find answers to your questions.

There are some other national foundations that provide help for people with MS.

They include NeedyMedsThe Patient Access Network Foundation and Chronic Disease Fund.

International Help

 The MS International Federation is a unique global network of MS organisations, people affected by MS, volunteers and staff from around the world. Our movement is made up of 48 MS organisations with links to many others.

Our vision is a world without MS

Our mission is to inspire, mobilise and bring the world together to improve the quality of life of everybody affected by MS and to end MS forever. Visit them at https://www.msif.org/.

Suicide Prevention Hotlines Around the World

Death by suicide is a tragedy that can be prevented. If you or someone you love is thinking of dying by suicide please reach out for help NOW.

An international list of suicide prevention hotlines can be found by clicking on the link below that will take you to the page run by the International Bipolar Foundation.

Click Here to Find Help

 

 

Don’t forget to download and utilize our free Patient Next Door app onto your smartphone. With it, you can share the healthcare journey of you and your child with people who are facing similar conditions.

As always, we here at Patient Next Door love serving you and hope you will join us in aiding others in finding resources and hope.

We care about you.

Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.

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