“Embracing My Now” Part 3: Finding Support for ALS
Sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA)
This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for U.S. audiences only. Any other present or future content posted by the contributor, not expressly designated as “Mitsubishi Tanabe Pharma America, Inc. – sponsored content” is not associated with MTPA. Juan Reyes is an actual patient and is being compensated by MTPA for his sponsored posts.
Imagine having your life turned upside down with the words, “you have ALS”, and then imagine losing everything that gives you security, comfort, and support. This, in fact, happens to many people dealt a terminal diagnosis, abandonment. Losing your entire support network, all of it! It’s an insidious occurrence around the world, hidden in plain sight.
What then? Where to turn?
Receiving an ALS diagnosis tends to do one of two things; rally your family and friends around you or it can bring out the worst in them. This is just a simple fact of life. Sadly, there may be many people living with ALS who are abandoned and left to navigate their journey alone. How can these individuals embrace this new challenge as their body and family turn against them?
There simply is no solution for abandonment. Each case requires a tailored approach for that person’s needs. Some resources are available through ALS clinics, various nonprofits, and government agencies.
Considering the degree of care needed, finding support may be a challenging experience depending on what resources are available. I have found that in these instances, it is the ALS community that must come together and embrace the pALS to show them support.
Personally, I am blessed to have a very supportive family. I can’t fathom living with ALS and also being abandoned. My heart goes out to anyone dealing with this very situation.
During a medical emergency a year ago, I was unable to move, and because of the pandemic my family wasn’t allowed to help me. I was completely dependent on the hospital workers, who were overwhelmed and understaffed. I felt alone and experienced firsthand the sense of helplessness that those who are abandoned might feel. It took some convincing, but in the end, my doctor allowed my family to help me. Without them, I would have been miserable.
It’s not just a matter of who you embrace but who embraces you – “Embrace Your Now!”
MTPA offers the JourneyMateTM Support Program featuring a JourneyMateTM Resource Specialist who can help you and your loved ones learn about ALS and RADICAVA ORS® (edaravone) or RADICAVA® (edaravone) IV as a treatment option. Call toll-free 1-855-457-6968 or visit https://www.radicava.com/patient/journeymate/.
Interested in sharing your RADICAVA ORS® or RADICAVA® IV experience with others? MTPA offers the Share Your Story program to allow real people to share real stories. To learn more, and for a chance to share your story, call a JourneyMateTM Resource Specialist toll free at 1-855-457-6968 or visit https://www.ShareYourALSStory.com.
This information is intended for U.S. audiences only 18 years of age and older. RADICAVA ORS and RADICAVA IV are available by prescription only. Talk to your doctor to see if RADICAVA is right for you.
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
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.