Discover how one woman’s resilience and determination are reshaping the narrative of living with ALS.
At first, the signs were subtle for California native, Kate. She recalls her fingers struggling to button her pants a few years ago. Then, while working as a nurse practitioner, Kate had trouble twisting open a syringe. It was during this moment that she recognized an unusual weakness in her right hand.
These symptoms escalated into a series of concerning incidents, which Kate initially attributed to issues like carpal tunnel or a pinched nerve. But, in 2018 at age 32, several medical consultations over three months led to the devastating diagnosis of amyotrophic lateral sclerosis (ALS), turning Kate’s world upside down.
“It was the worst day of my life,” recalls Kate, who was alone at her doctor appointment because her husband was out of town.
Commonly known as Lou Gehrig’s Disease, ALS is a progressive neurodegenerative disorder that currently has no cure.1 It affects nerve cells in the brain and spinal cord, leading to muscle weakness, loss of movement, paralysis, and ultimately, death.1
Early in Her Journey
As Kate educated herself about ALS, she discovered that life expectancy for someone with this disease is just two to five years.2
“Moving past the doomsday diagnosis—depression was difficult the first month. It was a complete blur,” she recalls. Kate struggled with fatigue, her muscles weakened, her speech slurred, and her outlook tanked.
“But here I am, many years later. I’m still able to walk, talk, breathe, eat on my own, swallow,” she marvels. “There are so many stages to come, and no one hands you a roadmap for what that timeline will be.”
What made the difference for her? Finding the right treatment, surrounding herself with support, and adopting a mindful approach to life.
Treatment and Management
Everyone has unique treatment needs, and as an avid traveler, an important aspect in finding the right treatment option for Kate was one that allowed her to keep up with this passion. She talked to her doctor about her needs, and when she found out RADICAVA ORS® (edaravone) was an approved treatment option for ALS, she was instantly overcome with joy. “Taking RADICAVA ORS® has worked out well for me, especially with home delivery and being able to travel with it. The flexibility this oral treatment option offers fits well into my life.”
Store RADICAVA ORS® upright at room temperature between 68°F-77°F. Protect from light.
Within the last few years, Kate has travelled to Las Vegas, Cancun, and Napa, and with the ease of travelling with RADICAVA ORS®, Kate has even bigger plans including more international travel.
The most common side effects of RADICAVA® IV include bruising (contusion), problems walking (gait disturbance), and headache. Fatigue was also reported in 7.6% of patients taking RADICAVA ORS®. Talk to your doctor about all the benefits and risks associated with treatment.
RADICAVA® IV and RADICAVA ORS® are indicated for the treatment of amyotrophic lateral sclerosis (ALS). Do not receive RADICAVA® IV or RADICAVA ORS® if you are allergic to edaravone or any of the ingredients in RADICAVA® IV and RADICAVA ORS®.
Please see Important Safety Information below and click here for full Prescribing Information and Patient Information.
Coping Strategies and Mindset Shifts
Amidst the turmoil of her diagnosis and new life living with ALS, Kate found solace in the support of her medical team and her husband, Kevin, who stands as her steadfast companion through the daily struggles. She also found great strength from her friends.
“I was going to a bridal shower where I was surrounded by 25 strong women,” she explains. “They reminded me that no matter what challenges I was about to face, I was loved and supported.”
With a resilient spirit, Kate commits to living in the present moment, despite the uncertainties of the future. She regularly reminds herself that the disease progresses differently for everyone, but she emphasizes the importance of embracing each day and cherishing moments of joy—like cuddling with Otis, her beloved Bernese Mountain dog.
A pivotal aspect of Kate’s journey involves the support group she joined for young women diagnosed with ALS. “It’s not just older white men affected by this disease,” Kate points out. “But I’m living with ALS—I’m not dying from it.” Through a supportive community, she finds understanding and camaraderie, sharing experiences and offering mutual support.
Advice To Newly Diagnosed
With the support of her medical team, Kate navigates the complexities of treatment, adapting to new protocols and embracing advancements in care. She emphasizes the importance of open communication with your healthcare team. “Don’t be afraid to question anything and ask for everything,” she advises.
As a strong believer in living in the present, she notes, “Don’t get stuck in the worry of the future, the grieving of the loss of things you thought you would have or do. Get out there and make the most of every moment you have right now.”
Kate’s journey with ALS exemplifies the power of resilience, community, and living life to the fullest despite adversity. By sharing how she navigates life with ALS, Kate hopes to empower others facing similar challenges to share their own story of living with the disease. “Hearing from others – and knowing that my story has helped other people impacted by ALS – has made a world of difference to me. That’s one of the many reasons why I chose to partner with Mitsubishi Tanabe Pharma America to share my story.”
Mitsubishi Tanabe Pharma America’s Share Your Story program allows people living with ALS and their caregivers to share their own experiences of living with the disease and why treatment with RADICAVA® (edaravone) matters to them.
Visit ShareYourALSStory.com/ReadersDigest to watch Kate’s full story and hear more about her journey, explore stories from others impacted by ALS, and sign up for the opportunity to share your own.
IMPORTANT SAFETY INFORMATION
Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.
Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you:
- have asthma.
- are allergic to other medicines.
- are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
- are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of RADICAVA and RADICAVA ORS?
RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
- Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
- RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
- Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.
The most common side effects include bruising (contusion), problems walking (gait disturbance) and headache.
These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.
INDICATION
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Please see full Prescribing Information and Patient Information.
References
- ALS.org. What is ALS? https://www.als.org/understanding-als/what-is-als. Accessed April 2024.
- National Institute of Neurological Disorders and Stroke. Amyotrophic Lateral Sclerosis (ALS). https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als. Accessed April 2024.
