Living Fearlessly After An ALS Diagnosis
Editor’s Note: This story was written by Juan Reyes, an actual patient. He has been compensated by Mitsubishi Tanabe Pharma America, Inc. (MTPA) to share his story.
How did you come to terms with the news that you have ALS?
Compounding the earth-shattering effect of an ALS diagnosis, there is no cure, and many are told “we don’t know how long you have.” How on earth do you reconcile this news with the life you had planned?
There is no single approach, no blueprint to navigate. It takes courage and strength to face ALS head on, but it can’t be done alone, this disease requires immense support and care.
For me, I had to accept my ALS as a major factor in my life, but it’s not the defining aspect. I have chosen to embrace the love that encompasses me every day; my family is what truly shapes me and my existence, not being a person living with ALS.
ALS has forced me to shed many insecurities and fears. Am I afraid? Yes, but I won’t let fear impact my daily activities, treatment decisions, or drive the choices I make every day.
How I approached ALS treatment
Honestly, I was willing to explore all treatment options — after thorough discussion with my doctor, of course.
When RADICAVA® (edaravone) IV was presented as an option, I dove into the available literature, created a list of questions, and addressed them with my neurologist. We reviewed all pertinent data together, and while RADICAVA® is not a cure, it has been shown to help slow the decline of physical function in a medical study.
The information my doctor shared allowed me to achieve a level of understanding about the benefits and risks of treatment, and when the time came to make a decision, I felt comfortable moving forward.
RADICAVA® IV and RADICAVA ORS® (edaravone) are indicated for the treatment of 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®. See IMPORTANT SAFETY INFORMATION below.
I’m thankful for all of the moments I have with my family that allow us to create memories together. Embracing ALS has given me a truly blessed life. Why? Because I choose to #EmbraceMyNow.
Looking for support? Here are some resources to consider
The Mitsubishi Tanabe Pharma America Inc. (MTPA) Share Your Story program allows people living with ALS and/or their caregivers to share their own experiences of living with ALS and why treatment with RADICAVA matters to them. I shared my story because I want more people living with ALS to feel inspired and to understand they are not alone. Whether someone living with ALS is searching for more answers about the disease, or for new ways to live each day with purpose, hearing from others with similar experiences may make a world of difference.
Interested in sharing your experience with others? To learn more about the opportunity to share your story visit ShareYourALSStory.com or call a JourneyMateTM Resource Specialist.
MTPA offers the JourneyMateTM Support Program featuring a JourneyMateTM Resource Specialist who can help you and your loved ones learn more about ALS and RADICAVA ORS® or RADICAVA® IV as a treatment option. Call toll-free 1-855-457-6968 or visit https://www.radicava.com/patient/journeymate/.
A JourneyMate Resource Specialist discusses basic information about Mitsubishi Tanabe Pharma America, Inc. products and does not take the place of a patient’s doctor. Patients should be sure to talk to their doctor about all treatment-related questions, as their doctor is the best person to help a patient decide if treatment is right for them. If a patient has a medical emergency, they should call 911. Adverse events or product complaints should be reported by calling 1-888-292-0058.
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.
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).