Balancing A Career While Living with Relapsing MS
Growing up, my parents taught me the value of hard work. No matter what I was doing – playing sports, volunteering, or starting my first job – they always encouraged me to give it my all, but even more so, they led by example. Their work ethic was unparalleled and I watched them both grow successful careers as a result of their dedication. So when it came time for me to graduate from college, I knew I needed to embody their commitment to also find success for myself.
Just a few years after graduating, I was already following in their footsteps. I’d landed a new job in manufacturing I was excited about, was living in Baltimore with friends, and was in the best shape of my life. Life was good.
In fact, I was so content in my new, adult life that when I started experiencing weird symptoms, such as trouble swallowing and jumpy legs, I didn’t think much of it. But after I mentioned these symptoms to my primary care physician, she sent me for an MRI to be safe. When the results showed there was a faint spot on my brain, my doctor recommended I make an appointment with a neurologist even though she said it was probably nothing to worry about.
I did as she suggested, and in the weeks leading up to my appointment, things went downhill fast. Suddenly, I could barely run and was having trouble balancing. By the time I actually saw the neurologist, my symptoms were so obvious that she diagnosed me with relapsing multiple sclerosis (RMS) right away.
Figuring out a path forward
After I received my diagnosis, I was shocked, and quite frankly, nervous. I didn’t know much about RMS, but I had a feeling that it had the potential to disrupt the life I’d created for myself – particularly my recent successes in my career. I was rising through the ranks and had worked hard to get to where I was, so I was determined not to let this diagnosis get in the way – but I quickly learned that was easier said than done.
The first two years after my diagnosis were extremely difficult. There were many days when I could barely get out of bed. I had to move back in with my parents and there were nurses in and out of the house all the time. I went from being an independent and successful 27-year-old to feeling uncertain of my future.
But throughout all of this, I continued working – often from home when I couldn’t make it into the office. Though this was a period of great uncertainty in my life, there was one thing I knew for sure: I wasn’t ready to give up on my career dreams just yet.
LEMTRADA® (alemtuzumab) 12 mg IV is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.
SELECTED IMPORTANT SAFETY INFORMATION
LEMTRADA can cause serious side effects including autoimmune problems, infusion reactions, some kinds of cancers, thyroid problems, low blood counts (cytopenias), serious infections, inflammation of the gallbladder without gallstones (acalculous cholecystitis), and swelling of lung tissue (pneumonitis). Because of these risks, LEMTRADA is only available through a restricted program called the Risk Evaluation and Mitigation Strategy (REMS) Program.
Disclosing my diagnosis
The same day I was diagnosed with RMS, I decided to share what was going on with my boss. I emphasized that, despite my diagnosis, I was still committed to my work and being a part of the team. Disclosing an MS diagnosis is a very personal decision, especially when you are still trying to process your new reality yourself. My boss was a great mentor to me and someone I knew I could trust, but I know this isn’t always the case for everyone.
There are a variety of employment resources available to people living with MS from organizations such as the National MS Society, the Multiple Sclerosis Association of America, and MultipleSclerosis.net. These helped me learn my rights under the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA), as well as how to define RMS in simple terms to help others understand what I was going through.
In time, I decided to share my diagnosis with the rest of my co-workers as well, though I was hesitant at first, in fear that I would be treated differently. I started these conversations by explaining what RMS is, how it affects me, and my outlook on my future with the disease. I’ve found that being knowledgeable about RMS and how the disease works has made sharing my story with others a lot easier.
I’ve also learned it is important for me to remember that I cannot control other people’s reactions when I tell them about my disease. Though it isn’t always easy, I try not to take it personally if a conversation with a co-worker does not go the way I expect it to. Instead, I remind myself that I am not defined by my disease and think back to all I’ve accomplished in spite of it. I’ve been a hard-worker my whole life, and now, I just have one more thing to work towards – trying to manage my health.
Fighting back against RMS
Over the course of my RMS journey, I tried several disease-modifying therapies to treat my disease, but eventually, it became clear that none of them were working for me. So, I decided to regroup with my neurologist.
Before my appointment, I educated myself on other available treatment options. I figured I wouldn’t show up to a work meeting unprepared, so why wouldn’t I take my health just as seriously? I was encouraged by all of the information and resources I found online from both advocacy and news organizations. There are also websites such as the Voices of Determination blog that share real-world perspectives from others living with the disease.
After completing my research, I had an honest discussion with my neurologist about my long-term treatment goals and how I was feeling. We decided that LEMTRADA® (alemtuzumab) 12 mg IV, an infusion therapy for RMS, may be an appropriate next step for me. My family helped me weigh the risks and benefits of LEMTRADA, and after talking it over together, we decided to move forward with this treatment option.
Managing RMS in the workplace
From the moment I was diagnosed, I knew I wanted to keep working, but balancing RMS and my job took some getting used to. Post-diagnosis, I’ve had to figure out my new limitations and how to work around them. The biggest challenge for me has been managing my fatigue – I can no longer take on as much work as I used to. Instead, I maintain an open dialogue with my boss, where I candidly share the challenges I am facing and we work together to identify solutions. I also do my best to be proactive and think of potential solutions to bring to the table, rather than just complaining about my issues.
As part of this, we worked together to set a schedule that works for me – starting later in the morning and ending later in the evenings – because my fatigue is typically at its worst early in the day. I am also not embarrassed to go out to my car and take a 30-minute nap during lunch, if it means that I will be more productive for the rest of the afternoon.
Most importantly, I’ve learned not to be afraid to communicate how I am truly feeling. If I am struggling or not feeling great one day, I make sure to let my team know, so that I can manage expectations and adjust deadlines, as needed.
A positive outlook
Balancing a personal life and a career is hard for anyone, and it especially isn’t easy when you add MS into the mix, but I’m doing the best I can.
I remind myself that everyone faces challenges in life – mine just happens to be living with a chronic illness. And while I know I can’t change my diagnosis, I’ve come to believe that determination and a positive attitude can go a long way.
Despite living with a chronic illness, I am happy to share that my career is taking off. Today, I am the Director of Client Services and Marketing for my company. I just bought a new condo and I’m pursuing my MBA – all it took was a little hard work.
IMPORTANT SAFETY INFORMATION
LEMTRADA can cause serious side effects including:
Serious autoimmune problems: Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death. Serious autoimmune problems may include:
- Immune thrombocytopenia, which is when reduced platelet counts in your blood cause severe bleeding that, if not treated, may cause life-threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
- Kidney problems called anti-glomerular basement membrane disease, which can, if untreated, lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death. Call your healthcare provider right away if you have any of the following symptoms: blood in the urine (red or tea-colored urine); swelling of legs or feet; coughing up blood
It is important for you to have blood and urine tests before you receive, while you are receiving and every month, for 4 years or longer, after you receive your last LEMTRADA infusion.
Serious infusion reactions: LEMTRADA can cause serious infusion reactions that may cause death. Serious infusion reactions may happen while you receive, or up to 24 hours or longer after you receive LEMTRADA.
- You will receive your infusion at a healthcare facility with equipment and staff trained to manage infusion reactions, including serious allergic reactions, and urgent heart or breathing problems. You will be watched while you receive, and for 2 hours or longer after you receive, LEMTRADA. If a serious infusion reaction happens while you are receiving LEMTRADA, your infusion may be stopped.
Tell your healthcare provider right away if you have any of the following symptoms of a serious infusion reaction during the infusion, and after you have left the healthcare facility:
- swelling in your mouth or throat
- trouble breathing
- fast, slow, or irregular heartbeat
- chest pain
To lower your chances of getting a serious infusion reaction, your healthcare provider will give you a medicine called corticosteroids before your first 3 infusions of a treatment course. You may also be given other medicines before or after the infusion to try to reduce your chances of having these reactions or to treat them after they happen.
Certain cancers: Receiving LEMTRADA may increase your chance of getting some kinds of cancers, including thyroid cancer, skin cancer (melanoma), and blood cancers called lymphoproliferative disorders and lymphoma. Call your healthcare provider if you have the following symptoms that may be a sign of thyroid cancer:
- new lump
- swelling in your neck
- pain in front of neck
- hoarseness or other voice changes that do not go away
- trouble swallowing or breathing
- cough that is not caused by a cold
Have your skin checked before you start receiving LEMTRADA and each year while you are receiving treatment to monitor for symptoms of skin cancer.
Because of risks of autoimmunity, infusion reactions, and some kinds of cancers, LEMTRADA is only available through a restricted program called the LEMTRADA Risk Evaluation and Mitigation Strategy (REMS) Program.
Do not receive LEMTRADA if you are infected with human immunodeficiency virus (HIV).
Thyroid problems: Some patients taking LEMTRADA may get an overactive thyroid (hyperthyroidism) or an underactive thyroid (hypothyroidism). Call your healthcare provider if you have any of these symptoms:
- excessive sweating
- unexplained weight loss
- eye swelling
- fast heartbeat
- unexplained weight gain
- feeling cold
- worsening tiredness
Low blood counts (cytopenias): LEMTRADA may cause a decrease in some types of blood cells. Some people with these low blood counts have increased infections. Call your doctor right away if you have symptoms of cytopenias such as:
- chest pain
- yellowing of the skin or whites of the eyes (jaundice)
- dark urine
- fast heartbeat
Serious infections: LEMTRADA may cause you to have a serious infection while you receive and after receiving a course of treatment. Serious infections may include:
- Herpes viral infections. Some people taking LEMTRADA have an increased chance of getting herpes viral infections. Take any medicines as prescribed by your healthcare provider to reduce your chances of getting these infections.
- Tuberculosis. Your healthcare provider should check you for tuberculosis before you receive LEMTRADA.
- Hepatitis. People who are at high risk of, or are carriers of, hepatitis B (HBV) or hepatitis C (HCV) may be at risk of irreversible liver damage.
- Listeria. People who receive LEMTRADA have an increased chance of getting a bacterial infection called listeria, which can lead to significant complications or death. Avoid foods that may be a source of listeria or make sure foods that may contain listeria are heated well.
These are not all the possible infections that could happen while on LEMTRADA. Call your healthcare provider right away if you have symptoms of a serious infection such as fever or swollen glands. Talk to your healthcare provider before you get vaccinations after receiving LEMTRADA. Certain vaccinations may increase your chances of getting infections.
Inflammation of the gallbladder without gallstones (acalculous cholecystitis):
LEMTRADA may increase your chance of getting inflammation of the gallbladder without gallstones, a serious medical condition that can be life-threatening. Call your healthcare provider right away if you have any of the following symptoms:
- stomach pain or discomfort
- nausea or vomiting
Swelling of lung tissue (pneumonitis): Some people have had swelling of the lung tissue while receiving LEMTRADA. Call your healthcare provider right away if you have the following symptoms:
- shortness of breath
- chest pain or tightness
- coughing up blood
Before receiving LEMTRADA, tell your healthcare provider if you:
- are taking a medicine called Campath® (alemtuzumab)
- have bleeding, thyroid, or kidney problems
- have HIV
- have a recent history of infection
- have received a live vaccine in the past 6 weeks before receiving LEMTRADA or plan to receive any live vaccines. Ask your healthcare provider if you are not sure if your vaccine is a live vaccine
- are pregnant or plan to become pregnant. LEMTRADA may harm your unborn baby. You should use birth control while receiving LEMTRADA and for 4 months after your course of treatment
- are breastfeeding or plan to breastfeed. You and your healthcare provider should decide if you should receive LEMTRADA or breastfeed. You should not do both.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. LEMTRADA and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take medicines that increase your chance of getting infections, including medicines used to treat cancer or to control your immune system.
The most common side effects of LEMTRADA include:
- thyroid problems
- swelling of your nose and throat
- urinary tract infection
- feeling tired
- trouble sleeping
- upper respiratory infection
- herpes viral infection
- fungal infection
- joint pain
- pain in your arms or legs
- back pain
- sinus infection
- mouth pain or sore throat
- tingling sensation
- stomach pain
- sudden redness in face, neck, or chest
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of LEMTRADA.
You may report side effects to the FDA at 1-800-FDA-1088.
2018 Genzyme Corporation. All rights reserved. LEMTRADA, Sanofi and Genzyme registered in U.S. Patent and Trademark Office. SAUS.LEMT.18.XX.XXXX. Last updated: 10/2018
The preceding article is content provided by our sponsor Sanofi Genzyme. The views and opinions expressed in the content above are not the views and opinions of Multiple Sclerosis News Today or its parent company, BioNews Services, LLC.
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