Providing Love and Support for My Daughter With ALS
This is a sponsored post written by Luz Diaz in collaboration with MTPA
Like any mom, Luz was shocked when her 19-year-old daughter, Emma, was diagnosed with ALS. Discover how they learned to face the future and move forward together.
This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for US 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. Luz is an actual caregiver of a patient who is taking RADICAVA ORS® (edaravone).
The information provided here is general in nature and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified healthcare provider with any questions regarding a medical condition.
Individual results may vary. Please see Important Safety Information below, full Prescribing Information, and Patient Information on Radicava.com.
A Shocking Diagnosis
In 2020, I went over to Emma’s apartment to help her move out. As she was heading towards the car it looked like she was walking a little funny, so we decided to make an appointment with a foot doctor to get her checked out. As a mom, I always want to help Emma stay on top of her health. But with her being so young, I wasn’t expecting it to be anything serious.
The foot doctor wasn’t sure what was causing issues with her walking and referred her to a neurologist. They ran a series of muscle tests on her that showed the muscles in her right leg were much weaker compared to her left. After the muscle tests, Emma had a call with her current doctor, who wanted to run a genetic test. That’s when I started to become more concerned.
On January 11, 2021, we spent 8 long hours at a clinic in our area and found out Emma had ALS. Emma was only 19 years old at that point. It was really scary and devastating, and we’d just lost my niece to cancer the year before. I knew I had to stay strong for Emma.
Standing Strong in the Face of ALS
We thought an ALS group would be a great place to get support, so we joined. But it ended up being a challenge I didn’t expect. We met other people with ALS and their caregivers, most of whom were in their 50s and 60s. Speaking to them was really tough because Emma was so young. I had trouble wrapping my head around the fact that she had ALS, and just kept thinking, “This is not real!”
Although I was devastated, Emma was, and still is, so resilient. She never gets too upset or feels bad for herself. The fact that she doesn’t break down helps me keep my emotions in check and stay focused on what we need to do.
Playing the “Mom Card”
While I try to give her as much space as possible, there have been a couple instances where I had to play the mom card and say, “You’re going to do this.” One of them was with medication. When her doctor first prescribed her medication, she was given infusions through a PICC line until we switched to using a port. Emma didn’t want to do it. I knew where she was coming from, but I stepped in and said, “You’re going to do it because you’re 19 years old and that’s what’s available for treatment.” I give in to her a lot, but when I feel I need to step in, she respects it.
The number of doctor appointments is one of the hardest things to get a handle on. Emma’s very mobile and self-sufficient. She doesn’t need help showering or getting dressed yet. It’s challenging, though, to balance my work schedule and drive her to all of her appointments.
Keeping Hope Alive
ALS doesn’t discriminate. It’s not a cookie-cutter disease. Symptoms and levels of progression are different from person to person. Because Emma is so young, it gives me more of a desire to get involved, do the walks, participate in the fundraisers, and not give up. I need to have hope for her and for everyone else battling ALS. That’s why I’m sharing Emma’s story—to help people living with ALS stay on their journey, keep an open mind, and not lose hope.
Treating Emma’s ALS With RADICAVA ORS® (edaravone)
Emma started RADICAVA ORS® in June of 2022. She doesn’t need help taking it. She takes it orally in the morning, as prescribed, on an empty stomach with the 5-mL syringe that comes with it. It’s part of her routine now, and fits my schedule.
We understand that there is no cure for ALS. But if there’s a possibility that RADICAVA ORS® could slow the progression for her ALS, I want her to have that. What mom wouldn’t want that for her daughter?
In the clinical study, RADICAVA® slowed the loss of physical function as measured by the ALS Functional Rating Scale-Revised (ALSFRS-R) by 33% versus placebo. At 24 weeks (about 6 months), patients who did not receive RADICAVA® (66 patients) declined more rapidly in physical function, having lost an average of 2.49 points more than those who received RADICAVA® (68 patients). The most common side effects of RADICAVA® 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. This is Emma’s experience and does not necessarily represent the experience of others.
RADICAVA ORS® (edaravone) is indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Do not receive RADICAVA ORS® (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA ORS.
Please see Important Safety Information below and click here for the full Prescribing Information and Patient Information.
Learn more about ALS and how RADICAVA ORS® may help you.
Learn more about participating in the Share Your Story program at ShareYourALSStory.com.
Watch Andi, another caregiver of a loved one with ALS, share her story about ALS and RADICAVA ORS®.
IMPORTANT SAFETY INFORMATION
Do not receive RADICAVA ORS® (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA ORS.
Before you take 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 ORS will harm your unborn baby.
- are breastfeeding or plan to breastfeed. It is not known if RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive 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 ORS?
RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
- Hypersensitivity reactions have happened in people taking RADICAVA ORS and can happen after your medicine has been taken.
- RADICAVA ORS contains 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 of RADICAVA® (edaravone) and RADICAVA ORS include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA and 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 ORS® (edaravone) is indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Please see the full Prescribing Information and Patient Information, also available at www.radicavaors.com.
RADICAVA, RADICAVA ORS, the RADICAVA ORS logo, and the corporate symbol of Mitsubishi Tanabe Pharma America are registered trademarks of Mitsubishi Tanabe Pharma Corporation.
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