When I sat down with 38-year-old Adam Kemble for our interview, there was one point that he really drove home: “You have the opportunity to choose what you let define you.” Currently, there are many factors that define Adam. He is a family man, living in Canada with his wife and two children, aged 16 and 17. He is a good friend. He is a businessman, currently working on developing his own realty and home-buying business. But one thing that Adam has never wanted to define him? His multiple sclerosis (MS) diagnosis.

In fact, he shared:

“Most of my friends up until now don’t even know that I have MS and that’s the way I prefer it. I don’t want to be told I can’t do something.” 

Diagnosed at age 14, Adam has spent years living with relapsing and remitting MS: episodes of mobility issues, convulsions, vision difficulties. However, his journey with MAVENCLAD (cladribine) has given him a new lease on life. For the first time in 24 years, Adam’s brain scans show no new lesions or activity.

So join Patient Worthy in talking to Adam about MS, MAVENCLAD, and how he sees his life moving forward. 

Multiple Sclerosis (MS)

Multiple sclerosis (MS) is a neurological disease which impacts and inhibits communication between the brain and the body. In MS, the immune system mistakenly levies an attack on the central nervous system (CNS), comprised of the brain, optic nerves, and spinal cord. When the immune system attacks myelin, the protective covering of nerve cells, it prevents or alters messaging within the CNS. In advanced cases of MS, the nerves may be permanently damaged.

Although people of almost any age can develop MS, it is most commonly diagnosed between ages 20 and 50. The condition impacts females 2-3x more than males. Although the disease is immune-mediated, many researchers believe that MS results from a blend of environmental and genetic factors. 

There are two main forms of MS: progressive, and relapsing and remitting. In the first form (progressive), the disease progresses without remission and may result in worsening function. An estimated 15% of diagnoses are progressive. On the other hand, patients with relapsing and remitting MS experience symptomatic periods alongside periods of remission. During remission, symptoms may (but do not always) disappear.

Because MS can affect multiple parts of the body, symptoms vary. So symptoms that may be present include, but are not limited to:

• Fatigue
• Loss of balance and coordination
• Numbness, especially in the face or throughout the body
• Involuntary muscle spasms
• Bladder dysfunction 
• Dizziness
• Anxiety and depression
• Changes in speech (slurring, slowed speech)
• Difficulty swallowing
• Changes in vision (eye pain, blurred vision)

Adam’s Story

When he was just 14 years old, Adam started experiencing some vision difficulties. In particular, he began to lose almost all of his vision in one eye. He went to visit an optometrist and, luckily, the optometrist was able to recognize what was going on right away: multiple sclerosis. One specialist referral and a few MRIs later, the diagnosis of relapsing-remitting MS was confirmed. 

When he first found out about his diagnosis, Adam said he felt overwhelmed and thought that:

“it’s a death sentence, essentially. But then very quickly I realized that I would need to muster up as much strength as I could to just live a normal life…a better than normal life.”

Initially, Adam was also able to speak to some individuals from the National Multiple Sclerosis Society, who asked him how he was doing and offered some educational and support-based resources. He also worked with Dr. Luanne Metz, who helped create one of the original treatments for MS.

During this time, he said, he made the decision to apply himself, live his best life, and just let come what may. He shared:

“If I were to think about it every day or all the time, I would be paralyzed with fear and wouldn’t be able to move forward. I made the decision to live my best life and just let come what may, and I’m very focused on it as a way that I identify himself.”

Symptoms and Experience

Despite his positive outlook, Adam still grappled with some difficulties associated with his MS diagnosis. For example, he has experienced some symptomatic episodes which affect his daily life in terms of coordination and fatigue.

Adam explained:

“I liken MS to a mouse in an electrical panel, just nibbling on wires. In the analogy, my immune system is the mouse; it goes and attacks my nerves and the myelin coating, and every once in a while, those little attacks will cause the nerves to be pinched and the wire to short.”

Symptoms that may appear during an attack are “a mixed bag, Russian Roulette,” where many symptoms will differ. However, every once in a while, he will experience repeats of the same symptoms. When his daughter was a baby, for example, he went through a series of episodes that felt like electrical convulsions. All of his muscles would tense up for five seconds and then release. For a few weeks, he experienced these convulsions up to 100 or 200 times per day.

Treatment

Treatment was also time-consuming and sometimes invasive. Adam described the injections and infusions that he received when he was younger as uncomfortable and extremely painful. The injections were administered daily, and his body did not respond well to them. 

In addition, Adam must receive an annual MRI to monitor the lesions on his brain. During the MRI, doctors administer a dye injection partway through. This allows doctors to determine which lesions are active and which are simply old. At one point, the MRI lit up to a point where the doctor explained that there were “innumerable” lesions.

It was around this time that he knew that he needed to make a change. He had been hesitant to go on treatment:

“because I was turned off by the injections that I had when I was younger.”

He was determined that:

“until my body told me otherwise, I was going to do everything that a normal person would do. And when I couldn’t, then I would reassess.” 

But his doctor insisted, offering five or six potential treatment options. During this time, she laid out the various delivery methods, side effects, and efficacy. When Adam began researching all of the treatments, he decided to:

“Choose the way that is not a lifelong thing…like taking a Bandaid off. Do it once, make the concessions to protect myself, and live my life to the fullest.” 

He chose MAVENCLAD.

MAVENCLAD

The MAVENCLAD website describes the treatment as:

The first and only short-course oral therapy with no more than 10 treatment days a year over 2 years. Because of its safety profile, MAVENCLAD is generally used in people who have tried another MS medicine that they could not tolerate or that has not worked well enough.

Adam explained in more detail how the treatment actually works. Each treatment cycle, you take one week of pills. Then a month later, you take a second week of pills:

“After that, your immune system drops to essentially nothing and rebuilds itself back up. I liken it to the IT solution – ‘if it’s not working properly, turn it off and turn it back on again.’”

According to Adam, he did experience some side effects, but these were not terribly bad: some additional fatigue and weakness. However, there was a potentially frightening episode when, on his first round, he got a hangnail. When the hangnail got infected, Adam had to go to the hospital as his body was now immunosuppressed and did not have the ability to fight the infection. Much like he experienced following his daughter’s birth, this infection led to another series of electrical convulsions.

The second round of treatment is meant to happen one year after the first. However, COVID-19 presented an issue, as Adam’s secondary follow-up period would have occurred right at the start of the global pandemic. Because of this, Adam and his doctor decided to hold off as long as possible because:

“a global pandemic and drugs that get rid of your immune system are not usually friends.” 

The Second Round of Treatment

Eventually, Adam took a 3-month quarantine so that he could receive his second round of treatment. This required stepping back from his job and, eventually, receiving an MRI. While he still has to speak to a doctor, a nurse from the clinic has told him that his brain lesions have stabilized. For the first time in 24 years, there is no new activity. Adam explained that he is very happy to have chosen Mavenclad considering the early results. Although he still needs to speak to the doctor and get a better understanding of what this means, he feels cautiously optimistic.

This offers him:

“A new lease on life and the ability to be far more forward-looking than I was before because the matter of fact is, for the past 24 years, I could wake up in the morning and not be able to walk, not be able to see, not be able to do anything. If I sat paralyzed in fear, that’s what I’d be — paralyzed. But I put that in the back of my mind and pressed forward the best I could.”

He explained that in theory, his body is no longer playing Russian Roulette. His cautious optimism has let him reevaluate his plans for the future and be more excited about taking on new opportunities. For example, Adam is looking forward to starting his new realty career:

“I’ve always liked working with people and I enjoy the homebuying process, and I want to be able to give that back to others.”

MS & Support

During his journey, Adam has been supported by his friends and family who knew about his condition. But he gave a special shout-out to his mom and his wife for their support.

Beyond that, he found resources through his clinic and raised money for charity events which supported the National MS Society. While he has not used many online support groups, his wife is active in a few of them and has shared Adam’s experience. It can be easy to believe that those outside of our immediate circles do not really care about our experience, health, struggles, or accomplishments. But Adam found a different response:

“the amount of reactions from people who were scared to take that leap, how much the results of my stories inspired them to take the next step in their healing, and the fact that it was actually making an impact.”

Adam realized that countless people in his life have been silently carrying the weight of his MS diagnosis right along with him for years – just slightly behind the scenes. He shared:

I didn’t really fully comprehend the impact that my health and well-being (MS issues or otherwise) had on so many OTHER people.

The outpouring of love, relief, and care he found through sharing his story also motivates him to continue down this path. Ultimately, his journey has served to build a community and to help others recognize that they are not alone.

Adam would be willing to speak with anybody who has questions about MS (or real estate). So if you are newly diagnosed, have questions about MAVENCLAD, or anything along those lines, Adam would love to speak to you. If interested, please get in touch and we will connect you!

Self-Advocacy

But he also wanted to ensure that everyone is able to make the choices that are right for themselves. He is a huge fan of self-advocacy and explained that:

“It may not be easy and it may be the worst news you’ve ever had, but if you just keep going, you could find hope on the other side. Find all of your options, do research, take the leap, and make the choices that are best for you.”

Of course, it must be acknowledged that these decisions are sometimes difficult or frightening. Adam discusses how there’s a possibility that his immune system was keeping a dormant virus or health issue in check, and that it could have overtaken him while on MAVENCLAD. But he also stresses that the risk was worth a chance at life. Now he just hopes that he can inspire someone else on their journey, whether with MAVENCLAD or otherwise:

“If that means that there will be one more person who can have something similar happen, then it’s all worth it.”

As for his results? He should hopefully find out a more definitive answer by the end of March (and we’ll update you together)!