Talk to any mom and she’ll tell you that motherhood is at once the most joyful and challenging experiences of a lifetime. Talk to actor Jamie-Lynn Sigler and she’ll echo that sentiment while candidly opening up about the very specific challenges that come with raising children and dealing with relapsing multiple sclerosis (RMS), the most common form of MS.¹ MS is a chronic inflammatory disease that impacts the central nervous system and disrupts the flow of information between the brain and body.² ³ RMS is characterized by periods of relapses or “attacks” when symptoms arise or get worse, followed by periods of reduced or no symptoms.¹ ³
Sigler was diagnosed with RMS at the age of 20. She was a full-time actor and found ways to hide what she was experiencing from others, such as saying she had injured herself exercising. As a result, she kept her condition under wraps until she was 34 years old. Now — still acting and loving life as a mom of two boys — Sigler is anything but secretive, speaking openly and honestly about her disease through her collaboration with Novartis, for which Romper got an exclusive on her motherhood experience. Independent of her work with Novartis, Sigler also created a podcast, MeSsy, with a fellow celebrity mom who was diagnosed with MS in 2021. The two have an infectious dynamic, poignantly flipping between tears of sadness to tears of laughter in the span of each episode, aiming to demystify the messiness of life.
“I’ve only known motherhood with RMS,”
Sigler says, having given birth to her first son in 2013 — years after her diagnosis. At that point, she still had not gone public with her illness and had no plans to do so. However, she understood that living with a secret would not be the best way forward. “There was a point where I realized, as parents, we want to tell our kids that anything is possible and that what makes you different makes you unique. These are the messages I’m trying to teach my son, and then I’m going to ask him to keep a secret for me one day? It felt conflicting with the world I wanted to welcome my son into.”
“It’s been a journey of giving myself grace for my limitations,” Sigler continues. “While I may be different from other moms in terms of my abilities, I’m no different in how I show up for my kids.” Having welcomed a second son into the world in 2015, she’s now a busy “boy mom,” which can be very testing on one’s energy limits — RMS or no RMS. Both of her kids play sports, and the things that many people take for granted — such as taking them to practices, packing up the gear and being outside for long periods of time — poses challenges to those living with MS as they may experience fatigue, muscle weakness, and difficulty walking, among other symptoms.⁴
After a particularly long outing recently, Sigler recalled her older son’s response to her discomfort, which he intuitively picked up on. “He looked at me, and he said, ‘You know, Mom, you’re doing a really good job at this RMS thing.’ I just started to cry, and he was like, ‘I’m really, really proud of you,’” recalls Sigler with a lump in her throat. “And I just thought, for all the things that I feel like I have to sit out for — like the mother-son kickball game — maybe I’m raising an empathetic child who will be able to really acknowledge and see people, not judge them, and just be really kind about that.”
Of course, no child wants to see their parents struggling, and her younger son, at times, frustratingly compares her to other moms. But Sigler speaks of how RMS has unexpectedly guided her boys to be communicative, empowering them to express their feelings about the good and the bad. Communication, after all, is the foundation of any good relationship. “Their wives can thank me someday!” Sigler says with a laugh, exuding the strength and resilience that comes with boldly looking obstacles in the eye with a sense of humor.
Jamie-Lynn Sigler is a wealth of wisdom, which she prefers to refer to, humbly, as “experience,” gained through her journey with RMS. Channeling everything she’s learned, she has created a 3-step guide with Novartis, the makers of KESIMPTA® (ofatumumab), an RMS treatment with proven results* that she takes once a month.† Sigler can take KESIMPTA herself at home or on the go, and treatment time takes less than a minute a month† when ready (after completing the three weekly starter doses).⁵ The 3-step guide, available at ReframingMS.com, offers tangible, action-oriented tips for those living with RMS — whether newly diagnosed or wherever they are in their journey — to “Reflect, Reframe, Reach Out.”
“The thing I say, first and foremost, is give yourself time: time to wrap your head around the diagnosis and the feelings that come with it,”
says Sigler. “There’s a grieving process that comes with that — a grieving for your old life, your old body.” This is what makes up the essence of her first step: “Reflect on those feelings, emotions, whatever. Allow it all to sit with you. You have every right to feel all of this.”
The next move is to reframe. “There’s an adjustment,” Sigler says, intimately understanding the transition from knowing yourself before and after RMS. “You’re going to have to reframe what your life looks like now,” she continues, reminding us that this disease manifests itself in different ways for different people. She then stresses the importance of the next step.
“Reach out! You’ve got to ask for help,” Sigler urges with a firm but encouraging tone, understanding how difficult it can be for moms, in particular, to seek assistance from others. “In the beginning stages of motherhood, I wanted to do it all,” she recalls. “I didn’t want anybody else helping me.” Even while her husband was away playing professional baseball, Sigler was hesitant to hand her sons off to family and friends, even when she desperately needed the break. “To be honest, I was just so afraid of being replaceable. And, I’m sure any mother can relate to mom guilt. These types of feelings are very real, no matter what you’re dealing with.”
Now, Sigler has moved through that, acknowledging her needs and treasuring her community of girlfriends, her family, and her relationship with her MS specialist.
“Through this whole journey, something that I’ve found is my voice,”
explains Sigler, feeling more at ease when it comes to leaning on the “support squad” she surrounds herself with. “I’ve learned the beauty in that exchange: People like to help. People like to be of service. It’s a gift that you can both give each other.”
When it comes to working with her MS specialist, she stresses the importance of self-advocacy. “My doctor likes to say, ‘Your voice should be the loudest in the room,’ and it is. It allows me to feel like I have some control over my health. Speaking about what would be best for me is what led us to KESIMPTA, which is working well for me so far.”
Dr. Sharon Stoll, a board-certified neurologist and neuro-immunologist, appreciates the dialogue between patient and healthcare provider, known as “shared decision making.”‡ “Patients should be a part of the discussion — it’s their body,” Stoll insists, explaining that it ultimately makes everyone’s life better in the long run. “If a patient is more involved in deciding their treatment plan, they will be more compliant in taking their medications and attending follow-up appointments. It is 100% their decision, and as their healthcare provider, I’m there to guide them through the process.”
With her relationships nurtured and an effective treatment plan in place, Sigler is better equipped to be present for her sons and herself. “I’ve felt really liberated in this past year — just being able to speak my truth and trust that there’s going to be continued opportunity and space for me.” Between her work with Novartis, her MeSsy podcast (independent of Novartis), and the fact that she went public with her RMS are all factors she hopes help make life more manageable for others. “The more visibility and the more that we talk about these things, the more the stigma gets erased,” she says. “We’re all pushing through, we’re all persevering, we’re all dealing with things that are hard. The more we share and the more that we connect, the less hard life has to be.”
*In two studies vs. teriflunomide
†Once monthly after three weekly starter doses. Typical administration time when ready to inject.
‡Dr. Sharon Stoll is not Jamie-Lynn Siglers’ MS specialist.
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
- Hunter SF. Overview and Diagnosis of Multiple Sclerosis. Am J Managed Care. 2016;22:S141-S150.
- Trip, SA, Miller DH. Imaging in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2005 Sep;76 Suppl3(Suppl3):iii11-iii18.
- Multiple Sclerosis International Federation. Atlas of MS 3rd Edition. Part 1: Mapping multiple sclerosis around the world. Accessed July 28, 2023.
- National Multiple Sclerosis Society. MS signs & symptoms. Accessed July 28, 2023.
- Kesimpta Prescribing Information. East Hanover, NJ: Novartis Pharmaceuticals Corp; April 2024.
Additional reporting by Julie Sprankles
Photographer: Heather Moore; Art Director: Angela Poccia/BDG Studios; Associate Art Director: Allison Gore/BDG Studios; Styling: Chloe Harstein; Hair: Ryan Trygstadt; Makeup: Gita Bass; Prop Stylist: Katie Quinlisk; VP Production: Whitney Buxton; Production Manager: Danica Butkovich/BDG Studios; Editorial Direction: Irma Elezovic/BDG Studios
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