This College Volleyball Coach Isn’t Letting Her Relapsing MS Diagnosis Define Her

For many, your senior year of college is all about optimism, anticipating the boundless potential of the world that awaits you once you grab your diploma. As a student-athlete, Caylee felt all of this and more, energized by her vigor and the familial support of her teammates. Fiercely making plays on the volleyball court, Caylee was at the top of her game — until an unexpected diagnosis made her question if it was all at risk.

“I couldn’t believe it at first. It wasn’t something I ever expected to happen,” recalls Caylee, who first experienced blurred vision in her right eye during one of her volleyball games. As she sought treatment from various eye doctors, answers fell flat until she was finally referred to a neurologist, who scheduled an MRI for further evaluation. At 22, Caylee was officially diagnosed with relapsing multiple sclerosis (RMS), the most common form of multiple sclerosis (MS).¹

Affecting around one million people in the U.S., MS is a chronic inflammatory disease that impacts the central nervous system (the brain and spinal cord), which controls our movements, speech, senses, and more.² ³ Relapsing MS is characterized by periods of relapses or “attacks,” when new symptoms arise or get worse, and remissions, or periods when symptoms partly or completely go away.¹ ³ “I was very active when I was diagnosed and felt like I was at the peak of my health,” Caylee continues, contrasting her experience to this new reality. “I was excited for my senior year, and I didn’t want my life to change because of my diagnosis.”

Although she would roll with the punches on the court, Caylee initially pushed back on her neurologist’s suggestion to immediately start treatment. She was about to play her last season of college volleyball and felt passionate about holding off until it ended. About a week after her last game, Caylee had her first relapse that, this time, manifested itself as a numb sensation in her leg. Another MRI revealed 10 new lesions — or inflammation to the brain — which her neurologist took as a sign that her RMS was progressing.² As Caylee fought increasing weakness and discomfort, a wave of dread left her wondering if she’d even be able to attend her own graduation ceremony.

“I didn’t know if I was going to cross the stage,” admits Caylee with a small laugh, poignantly thinking back to this time of deep uncertainty. “I was feeling so weak at graduation, but I crossed the stage on December 18 with my family and friends cheering me on.”

“Getting diagnosed with MS is emotional,” says Caylee. “I was grieving the life that I thought I would have,” Caylee remembers. She is now grateful for letting herself feel all the feels, understanding that “reflecting” is the first of a 3-step guide that many, like herself, have turned to in the face of this illness. “It is an incredibly difficult and life-changing thing to experience,” says Caylee. “Allow yourself to feel that. You can grieve, you can be angry, you can be sad… but you can't stay there forever. There is so much more to life. This is just a part of it."

While the grief will never truly go away, Caylee advises others with MS not to assume the worst. As she moved from the severe grief phase, she could enter the “reframe” period. “I took time to process [my diagnosis], grieve it, and figure out my treatment.” Research and discussions with her MS specialist led her to KESIMPTA® (ofatumumab), a once-a-month* RMS treatment with powerful results† that she can take herself at home or on the go. When ready, treatment time takes less than a minute a month* after completing the three weekly starter doses.⁴ “We talked about a few different treatment options, and he had me make my own choice,” Caylee recalls, stressing the importance of self-advocacy and shared decision making, all part of the third and final step: “reach out.”

Gently allowing herself to process the multiple phases of her new illness and deciding upon KESIMPTA has led her to where she is now. As a full-time college volleyball coach at her alma mater, Caylee can still tap into the athleticism that defined her college career.**

By coaching others, Caylee is able to channel her innate competitive spirit while gracefully accepting her body’s new limitations — a concept she encounters with a newfound sense of gratitude. “Something I didn’t expect from my diagnosis was a greater appreciation for when things are going well,” she says. “Bad days will pass, and good days will come. It has been so much easier for me to not take anything for granted. I’m most excited to be living my life and to have found a treatment, KESIMPTA, that fits into my lifestyle.”

Visit ReframingMS.com to download the 3-step guide that outlines a process for reflecting, reframing, and reaching out so that people living with relapsing MS can voice their needs and reach for what’s possible, wherever they are in their journey.

*Once monthly after 3 weekly starter doses. Typical administration time when ready to inject.

**Individual results may vary. Consult with your doctor before starting an exercise regimen.

†In 2 studies vs teriflunomide

Important Safety Information

Who should not take KESIMPTA?

Do NOT take KESIMPTA if you:

- have an active hepatitis B virus (HBV) infection.

- have had an allergic reaction to ofatumumab or life-threatening injection-related reaction to KESIMPTA.

What is the most important information I should know about KESIMPTA?

KESIMPTA can cause serious side effects such as:

- Infections. Serious infections, which can be life-threatening or cause death, can happen during treatment with KESIMPTA. If you have an active infection, your health care provider (HCP) should delay your treatment with KESIMPTA until your infection is gone. KESIMPTA taken before or after other medicines that weaken the immune system may increase your risk of getting infections. Tell your HCP right away if you have any infections or get any symptoms including painful and frequent urination, nasal congestion, runny nose, sore throat, fever, chills, cough, or body aches.

- HBV reactivation. If you have ever had HBV infection, it may become active again during or after treatment with KESIMPTA (reactivation). If this happens, it may cause serious liver problems including liver failure or death. Before starting KESIMPTA, your HCP will do a blood test to check for HBV. They will also continue to monitor you during and after treatment with KESIMPTA for HBV. Tell your HCP right away if you get worsening tiredness or yellowing of your skin or the white part of your eyes.

- Progressive Multifocal Leukoencephalopathy (PML). PML may happen with KESIMPTA. PML is a rare, serious brain infection caused by a virus that may get worse over days or weeks. PML can result in death or severe disability. Tell your HCP right away if you have any new or worsening neurologic signs or symptoms. These may include weakness on one side of your body, loss of coordination in arms and legs, vision problems, changes in thinking and memory, which may lead to confusion and personality changes.

- Weakened immune system. KESIMPTA taken before or after other medicines that weaken the immune system could increase your risk of getting infections.

Before you take KESIMPTA, tell your HCP about all your medical conditions, including if you:

- Have or think you have an infection including HBV or PML.

- Have ever taken, currently take, or plan to take medicines that affect your immune system. These medicines could increase your risk of getting an infection.

- Have had a recent vaccination or are scheduled to receive any vaccinations.

• You should receive any required ‘live’ or ‘live-attenuated’ vaccines at least 4 weeks before you start treatment with KESIMPTA. You should not receive ‘live’ or ‘live-attenuated’ vaccines while you are being treated with KESIMPTA and until your HCP tells you that your immune system is no longer weakened.
• Whenever possible, you should receive any ‘non-live’ vaccines at least 2 weeks before you start treatment with KESIMPTA.
• Talk to your HCP about vaccinations for your baby if you used KESIMPTA during your pregnancy.

- Are pregnant, think that you might be pregnant, or plan to become pregnant. It is not known if KESIMPTA will harm your unborn baby. Females who can become pregnant should use birth control (contraception) during treatment with KESIMPTA and for 6 months after your last treatment. Talk with your HCP about what birth control method is right for you during this time.

- Are breastfeeding or plan to breastfeed. It is not known if KESIMPTA passes into your breast milk. Talk to your HCP about the best way to feed your baby if you take KESIMPTA.

Tell your HCP about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

How should I use KESIMPTA?

See the detailed Instructions for Use that comes with KESIMPTA for information about how to prepare and inject a dose of KESIMPTA and how to properly throw away (dispose of) used KESIMPTA Sensoready pens or prefilled syringes.

- Use KESIMPTA exactly as your HCP tells you to use it.

- Your HCP will show you how to prepare and inject KESIMPTA the right way before you use it for the first time.

- Do not inject into areas where the skin is tender, bruised, red, scaly or hard. Avoid areas with moles, scars, or stretch marks.

KESIMPTA may cause serious side effects including:

- Injection-related reactions. Injection-related reactions are a common side effect of KESIMPTA. Injecting KESIMPTA can cause injection-related reactions that can happen within 24 hours (1 day) following the first injections and with later injections. There are two kinds of reactions:

• at or near the injection site: redness of the skin, swelling, itching, and pain. Talk to your HCP if you have any of these signs and symptoms.
• that may happen when certain substances are released in your body: fever, headache, pain in the muscles, chills, tiredness, rash, hives, trouble breathing, swelling of the face, eyelids, lips, mouth, tongue and throat, and feeling faint, or chest tightness. Contact your HCP right away if you experience any of these signs and symptoms, especially if they become worse or you have new severe signs of reactions after subsequent injections. It could be a sign of an allergic reaction, which can be serious.

- Low immunoglobulins. KESIMPTA may cause a decrease in some types of antibodies. Your HCP will do blood tests to check your blood immunoglobulin levels.

The most common side effects of KESIMPTA include:

- Upper respiratory tract infection, with symptoms such as sore throat and runny nose, and headache.

- Headache.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please see full Prescribing Information including Medication Guide.

Indication

What is KESIMPTA (ofatumumab) injection?

KESIMPTA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS) including clinically isolated syndrome (CIS), relapsing-remitting disease, and active secondary progressive disease.

It is not known if KESIMPTA is safe or effective in children.

References

1. Hunter SF. Overview and Diagnosis of Multiple Sclerosis. Am J Managed Care. 2016;22:S141-S150.
2. Trip, SA, Miller DH. Imaging in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2005 Sep;76 Suppl3(Suppl3):iii11-iii18.
3. Multiple Sclerosis International Federation. Atlas of MS 3rd Edition. Part 1: Mapping multiple sclerosis around the world. Accessed July 28, 2023.
4. Kesimpta Prescribing Information. East Hanover, NJ: Novartis Pharmaceuticals Corp; April 2024.

Images: Courtesy of Novartis

6/24

424674