Writing a New Chapter on Her Relapsing Multiple Sclerosis Journey: Life With Moyna
This content is sponsored by Biogen and is intended for U.S. audiences only. Any other present or future content posted by the contributor, not expressly designated as “Biogen-sponsored content” is not associated with Biogen. Moyna is an actual patient and paid spokesperson for Biogen.
As a millennial woman living in New York City, a communications professional and a mom of a toddler, Moyna John was used to pushing herself to meet the demands of her busy life.
Moyna woke up one morning in late 2019 with partial vision loss. Within just a few weeks, numbness spread throughout her body, and she began to experience loss of mobility.
Less than a month after the onset of initial symptoms, an MRI confirmed Moyna’s diagnosis. Characterizing the shocking news as a “punch to the gut,” she was told she had relapsing multiple sclerosis (MS).
Newly aware of her immune-compromised position, Moyna was hesitant to travel into the crowded confines of New York City to her MS specialist’s office.
Once she felt ready, Moyna scheduled an appointment with her MS specialist, who suggested she may be a good candidate for TYSABRI® (natalizumab) – a once-monthly infusion for adults with relapsing forms of MS.
Moyna learned that TYSABRI – a proven treatment with more than 10 years of experience – may help to delay disability progression, reduce formation of new active brain lesions and reduce relapses. In addition to the benefits of TYSABRI, she learned about potential treatment risks, which can include PML, which is a rare brain infection that usually leads to death or severe disability; allergic reactions to TYSABRI; herpes infections or other serious infections. Please see below for Important Safety Information.
Together with her healthcare team, Moyna decided TYSABRI was the best treatment option for her.
“If You Don’t See the Space, Make the Space”
Reflecting on the time following her diagnosis, Moyna noted that she “turned to the internet but couldn’t find many experiences like mine and rarely saw people with MS who looked like me.”
Moyna joined local support groups but felt uncomfortable sharing her experience with older patients dealing with more severe MS manifestations, while she maintained a higher-functioning day-to-day routine as a newly diagnosed 20-something.
When expressing this frustration to her husband, he encouraged her, “If you don’t see the space, make the space.”
Motivated by her husband and building on her personal love of writing, Moyna was inspired to share her MS diagnosis for the first time on her Instagram profile, Life With Moyna – coincidentally, without realizing it was also World MS Day 2020.
At the height of isolation, during a turbulent time when people were seeking digital connection more than ever, Moyna’s social community grew to more than 12,000 MS warriors, mothers and millennials – helping her to process her MS experience along the way.
Life With Moyna documents a multitude of MS moments, ranging from self-care, to empowering affirmations for others living with a chronic disease, to nutrition and intimacy with a partner.
On infusion days, Moyna is surrounded by support from her digital circle, infusion center nurse, and family near and far. Over time, Moyna’s son has even come to understand when his mother is headed to her infusion and lends his support by kissing her hands when she returns home.
Managing Motherhood & MS
For Moyna, the most important part of adjusting to life with a chronic disease was learning how to balance caring for herself while continuing to parent her son.
“When I was first diagnosed, I felt so much guilt as a new mother. As I learned more about MS, I worried how I would explain to my son that I may not be able to walk and may not have the energy to play.”
Now, Moyna encourages parents beginning their MS journey – whether their own or supporting a partner – to first take time to process their diagnosis, then tackle parenting with MS. She reassures, “Your timeline is your timeline.”
“Give yourself grace. Allow yourself to have a few bad days. Listen to your body. Until MS, I didn’t realize how much I was not listening to my body as a new mother.”
When looking to start treatment, Moyna urges others living with MS to “do as much as you can to be heard, seen and prescribed the proper treatment by a healthcare provider. Navigate uncomfortable conversations and find a healthcare team that is on board with your long-term treatment goals, like mine was.”
What is TYSABRI?
TYSABRI is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease in adults. TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML). When starting and continuing treatment with TYSABRI, it is important to discuss with your doctor whether the expected benefit of TYSABRI is enough to outweigh this risk.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about TYSABRI?
TYSABRI increases your risk of getting a rare brain infection—called progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability.
- There is no known treatment, prevention, or cure for PML
- You should not take certain medicines that weaken your immune system at the same time you are taking TYSABRI. Even if you use TYSABRI alone to treat your MS, you can still get PML
- Your risk of getting PML is higher if you:
- have been infected by the John Cunningham Virus (JCV). JCV is a common virus that can cause PML in people who have weakened immune systems, such as people taking TYSABRI. Before or while you receive TYSABRI, your doctor may do a blood test to check if you have been infected by JCV
- have received TYSABRI for a long time, especially for longer than 2 years
- have received certain medicines that can weaken your immune system before you start receiving TYSABRI
- Your risk of getting PML is greatest if you have all 3 risk factors listed above. There may be other risk factors that have not yet been identified
- Patients who are anti-JCV antibody negative are still at risk for the development of PML due to the potential for a new JCV infection or a false negative test result. Therefore, patients with a negative test result should be retested periodically
- While you receive TYSABRI, and for 6 months after you stop receiving TYSABRI, it is important that you call your doctor right away if you have any new or worsening medical problems (such as problems with your thinking, eyesight, balance, or strength; weakness on 1 side of your body; and using your arms and legs) that have lasted several days. Tell all of your doctors that you are getting treatment with TYSABRI
- Because of your risk of getting PML while you receive TYSABRI, TYSABRI is available only through a restricted distribution program called the TOUCH® Prescribing Program
Who should not receive TYSABRI?
Do not receive TYSABRI if you have PML or are allergic to natalizumab or any of the ingredients in TYSABRI
What should I tell my doctor before receiving each dose of TYSABRI?
Before receiving TYSABRI, it is important to tell your doctor:
- If you have a medical condition that can weaken your immune system, such as HIV infection or AIDS, leukemia or lymphoma, organ transplant, or others, or if you have any new or worsening medical problems that have lasted several days
- If you are pregnant or plan to become pregnant. TYSABRI may cause low platelets, and in some cases also low red blood cells (anemia), in your newborn baby if you take TYSABRI while you are pregnant. It is not known if TYSABRI can cause birth defects
- If you are breastfeeding or plan to breastfeed. TYSABRI can pass into your breast milk. It is not known if TYSABRI that passes into your breast milk can harm your baby. Talk to your doctor about the best way to feed your baby while you receive TYSABRI
- About all of the medicines and supplements you take, especially medicines that can weaken your immune system. If you are not sure, ask your doctor
What are the possible side effects of TYSABRI?
TYSABRI can cause serious side effects. If you have any of the symptoms listed below, call your doctor right away:
- Herpes infections. Increased risk of infection of the brain or the covering of your brain and spinal cord (encephalitis or meningitis) caused by herpes viruses that may lead to death. Symptoms include sudden fever, severe headache, or confusion. Infection of the eye caused by herpes viruses leading to blindness in some patients has occurred. Call your doctor if you have changes in vision, redness, or eye pain
- Liver damage. Symptoms include yellowing of the skin and eyes (jaundice), unusual darkening of the urine, nausea, feeling tired or weak, or vomiting
- Allergic reactions (e.g., hives, itching, trouble breathing, chest pain, dizziness, wheezing, chills, rash, nausea, flushing of skin, low blood pressure), including serious allergic reactions (e.g., anaphylaxis). Serious allergic reactions usually happen within 2 hours of the start of the infusion, but they can happen any time after receiving TYSABRI
- Weakened immune system. TYSABRI may increase your risk of getting an unusual or serious infection
- Low platelet counts. TYSABRI may cause the number of platelets in your blood to be reduced. Symptoms include easy bruising, small scattered spots on your skin that are red, pink or purple, heavier menstrual periods than are normal, bleeding from your gums or nose that is new or takes longer than usual to stop, or bleeding from a cut that is hard to stop
The most common side effects of TYSABRI are:
- Headache, feeling tired, urinary tract infection, joint pain, lung infection, depression, pain in your arms or legs, diarrhea, vaginitis, rash, nose and throat infections, nausea, stomach area pain. If you experience any side effect that bothers you or does not go away, tell your doctor
These are not all of the possible side effects of TYSABRI. For more information, ask your doctor. To report side effects to FDA, please call 1-800-FDA-1088.
This information does not take the place of talking with your doctor about your medical condition or your treatment.