Hear from real people living with NMOSD

Kila’s Best Advocate

Voice-Over:

ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.

KILA:

My name is Kila. 

I’m a transition coordinator at a high school, and I help parents, teachers and students advocate for what they need.

Being an advocate for others has really helped me advocate for myself.

My journey with NMO started in 2014. I lost vision in my left eye. 

I couldn’t really see anything out of it. No shapes, no shadows, nothing.

I went to the hospital. They ran some tests, and they determined that I had multiple sclerosis.

So, they gave me steroids. My vision did improve.

Eventually, my symptoms started to progress, and I started to have new symptoms, like my lower back ached a lot. The fatigue got really bad. Eventually, I lost all sensation from the waist down.

I really felt like I was trapped within my own body. 

It was very frustrating for me. I continued to have steroid treatments, and I wasn’t getting any better, and that made me really question the MS diagnosis.

My ophthalmologist referred me to a neurologist he worked with, and they were able to see me quickly, and they ran some more tests and were able to give me the new diagnosis of neuromyelitis optica, NMO.

I was quite surprised, but I felt relief in knowing that it did have a name and they were able to tell me what it was.

I was excited to be working with a neurologist that knew how to help me.

At the time, my neurologist explained that there were no approved disease-modifying treatments for NMO.

However, he did mention a clinical trial for a drug called satralizumab, which was for people with NMO, and, of course, satralizumab is now known as ENSPRYNG.

I didn’t really have any hesitation. I was willing to try anything at that point.

Before I started on the clinical trial, we discussed all the risks and potential benefits of the treatment.

My doctor explained to me that there were serious side effects with ENSPRYNG.

Voice-Over:

ENSPRYNG may cause serious side effects including:

• infections
• increased liver enzymes
• low neutrophil count
• serious allergic reactions

The most common side effects of ENSPRYNG include:

• sore throat, runny nose (nasopharyngitis)
• rash
• fatigue
• extremity pain
• headache
• upper respiratory tract infection
• nausea
• inflammation of the stomach lining (gastritis)
• joint pain (arthralgia)

KILA:

My doctor and I are happy with my results on ENSPRYNG. Of course, everyone’s experience with ENSPRYNG is different.

I know a relapse could always be possibility, so I keep in good contact with my neurologist, and we talk about all the different issues that I may be having. 

It is important for me to do something for myself every day.

I love to take my dogs on walks. Some days, I just go maybe a block, and then other days I feel better, and we can go farther. So, it just kind of depends on how I feel, and they’re good with whatever we do.

I totally see NMO as a disease that is manageable.

I take ENSPRYNG as prescribed by my doctor so that I can reduce my risk of relapse. 

I have a good support network. I advocate for myself. I do whatever I can to make sure that I’m being mindful of my stress level. I try to watch my diet, and I try to make sure I get a good night’s sleep every night.

I feel like I’m on the right track with my treatment program.

To me, that is everything.

The Difference Peggy’s Diagnosis Made

Voice-Over:

ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.

PEGGY:

My name is Peggy, and I’m married, I have a son who is in college and a daughter in high school. I work for a small local nonprofit. I’m living with NMO.

So, my first symptoms were after a family vacation. I was having a severe headache over my left side of the face, and after a week or so, I realized that I had lost vision in my left eye.

The neuro-ophthalmologist told me that—that I might have MS. Unfortunately, six months later, I had another bout of optic neuritis, and I—that continued—having optic neuritis for the next couple years.

After, you know, two or three years of lots of steroids, I began to experience issues with my legs. So, I was just dragging my foot, using a cane or a walker to get through. I could not stand on my own. I couldn’t do anything. 

And I started having attacks every six weeks. And so, I had a conversation with my primary care doctor, and she suggested that I go see another doctor. And I went to go see him, and he suggested that I may not have MS—that I may have this other disease called NMO. So, he had me go do a blood test, and four weeks after that blood test, it came back that I was positive for the antibodies of NMO. 

Obviously, that was scary and devastating. But I had an answer.

At that point, there weren’t any options for ongoing treatment for NMO. So, my doctor called me and said he had found a clinical trial that was being studied for NMO called satralizumab. Satralizumab is now known as ENSPRYNG.

Before I started the clinical trial, we discussed all the risks and all the possible benefits of the treatment. Understanding all the possible side effects of medications are important to me.

Voice-Over:

ENSPRYNG may cause serious side effects including:

• infections
• increased liver enzymes
• low neutrophil count
• serious allergic reactions

The most common side effects of ENSPRYNG include:

• sore throat, runny nose (nasopharyngitis)
• rash
• fatigue
• extremity pain
• headache
• upper respiratory tract infection
• nausea
• inflammation of the stomach lining (gastritis)
• joint pain (arthralgia)

PEGGY:

The medication from the trial has been approved and is now known as ENSPRYNG. It was shown to reduce the risk of relapses. 

My doctor is pleased with the way the drug has been working. I haven’t had any relapses, and ENSPRYNG is helping me manage my NMO. Everyone’s experience is different. This is my experience.

Even though I haven’t had a relapse yet, I think about it every day, knowing that I could have one. So, I manage my sleep, I manage my stress, I manage what I eat and exercise. 

I want to do whatever I can to prevent the risk of having a relapse, and ENSPRYNG is helping me to reduce that risk. 

I see my doctor every four weeks. We frequently touch base once or twice in between those four weeks as well. I think it’s very important to find a doctor that you trust 100 percent and puts the patient first.

So, today I still have symptoms. I have diminished vision in my right eye. And I still have trouble walking and some coordination issues. My kids find my walking so entertaining, cause I’ll—we’ll be walking together and all of a sudden I’ll just veer off into them. And they completely understand. They’re like, “Mom!”

This whole experience has completely changed my outlook on life. I’m grateful I can work. I’m grateful I can go grocery shopping and walk through the grocery store. I’m grateful I can cook dinner for my family. 

Every day I don’t have a relapse is a wonderful day.

Talk to your doctor to see if ENSPRYNG may be right for you.

Donna’s Team

Voice-Over:

ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.

DONNA:  

My name's Donna. My husband and I have been married over 40 years. We have three sons and two adorable grandchildren. 

I love my family a lot. They are my rock when I need them, and they are my joy all the time.

It was Memorial Day weekend in 2013 when the lower half of my vision in my right eye resembled a snowy TV screen.

I went immediately to an optometrist. He couldn't see a reason that I was losing my vision there and said if it didn't get better in three weeks to come back and see him. Well, two weeks later I was just walking through the family room, and all of the sudden my eye went black. 

It was very scary. I couldn't see anything.

So the next day I was able to get into my ophthalmologist, and he did another exam and an MRI scan, which showed that there was a swelling in my optic nerve.

My ophthalmologist thought maybe it was a stroke, so he referred me to a cardiologist, where I went through several different heart tests, and everything came out normal.

Eventually I started working with a neurologist who put me through some more MRIs. 

He diagnosed me with NMO, or neuromyelitis optica. I had not heard of NMO before. I had no idea what it was. I got on the Internet to look up NMO, and what I found wasn't pretty.

My neurologist told me there was nothing as of yet on the market specifically for NMO, but he said that he was involved in a clinical trial for satralizumab. That is specific for NMO, and he thought I would be a good candidate. 

Of course, satralizumab is now known as ENSPRYNG. 

I jumped into the idea of the clinical trial with both feet because not only did I want to help myself, but I wanted to help others.

Before I started on the clinical trial, we discussed all the potential risks and benefits. 

My doctor explained to me that there were side effects with ENSPRYNG, some of which could be serious. 

Voice-Over:

Who should not receive ENSPRYNG

Do not take ENSPRYNG if you:

• are allergic to ENSPRYNG or any of the ingredients in ENSPRYNG.
• have an active hepatitis B infection.
• have active or untreated inactive (latent) tuberculosis.

ENSPRYNG may cause serious side effects including:

• infections
• increased liver enzymes
• low neutrophil count
• serious allergic reactions

The most common side effects of ENSPRYNG include:

• sore throat, runny nose (nasopharyngitis)
• rash
• fatigue
• extremity pain
• headache
• upper respiratory tract infection
• nausea
• inflammation of the stomach lining (gastritis)
• joint pain (arthralgia)

DONNA:  

Today, ENSPRYNG is approved and has been shown to reduce the risk of possible relapse. My doctor and I are pleased with my results on ENSPRYNG. 

ENSPRYNG is a once-a-month injection. With training from my doctor, I now self-inject monthly from home. 

Since I've been doing the injections for a few months now, I've become very comfortable in doing it myself.

My middle child, has had type 1 diabetes since he's 11, so I was very comfortable with giving him an injection, and so I thought, “if he can do it every day, I can do it once a month." Yeah, he's my inspiration.

I want to stay on treatment with ENSPRYNG because I feel that I want to reduce my risk of a relapse.

A result of another relapse could affect my vision in my other eye, or it could affect my ability to walk or use my arms.

I try to not let NMO stop me from doing things that make me happy. My husband and I enjoy a daily walk. We like to do tai chi. 

I like to stay active, but every once in a while, my body tells me, “You’re not gonna do that today,” and when that happens, I just stop and rest and wait it out.

My family really helps me with my positive attitude. If I have a down day, I just Facetime my grandkids, and they bring that smile right back to my face. 

My advice if you’re living with NMO is to surround yourself with a good team, a good neurologist, and support people who will tell you what you need to hear, not what you think you want to hear. Make sure that they’re up front with you.  

The most important thing to me is to stay on treatment so I can reduce the risk of relapse. That’s the most important thing.

Kitzia Fights Back

Voice-Over:

ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.

KITZIA:  

My name is Kitzia. I am married to Jose, and we've been married a few years.

One of the cool things we like to do is prep and make tamales. We have a family business.

And I've been living with NMO since 2005.

I was 14 years old. I was getting tingling sensations in my feet and in my hands. I was not urinating or using the washroom at all. I was also very sensitive in my stomach and my back area, and it felt like burning sensations internally, like bee stings.

At the time, I didn't know if it was serious or not, and then one day I tried to stand up, and I just collapsed on the floor.

My parents rushed me to the ER, and immediately from there they started hooking me up all over the place, and I had no idea what was going on. I just knew that I was in so much pain.

In the hospital, they thought it was multiple sclerosis in the beginning.

They did a lot more tests, and then they came back with a diagnosis of neuromyelitis optica, or NMO.

I was scared when they came back with that diagnosis, because I didn't believe that I had a disease. I was shocked, I was frightened, and I started crying. It took a lot of years for it to sink in.

My mom was very involved. She created an NMO Bible that was very organized, and she kept track of everything from medications to doctor’s offices to relapses that I had at the time. That was her way of keeping track of everything for me and what to do in situations.

We went through three different neurologists before we found the right one that was right for me that was able to help me.

He had really great bedside manners, and he was very knowledgeable with my condition.

As a teenager living with NMO, it was kind of difficult, especially when I would relapse. I was having about three to four relapses a year.

Most of my relapses involved my lower extremities. I would not be able to walk, so it was really hard for me to go back to the way it was beforehand.

I've had a couple relapses where I had facial paralysis (dysphasia) and I wasn't able to speak, and then another relapse that I had was vision loss, and they were very hard and scary to get through.

There were not many treatments out there, and as I became an adult, there were no treatments specific for NMO patients.

But one day, my neurologist told me about a clinical trial for a drug called satralizumab, which was being studied for NMO. Of course, satralizumab is now known as ENSPRYNG.

I was so excited to hear about the trial. My doctor felt I'd be a good candidate for it, and I wanted to give it a shot.

Before I jumped in, we discussed all the risks and potential benefits of the treatment.

My mom and I especially wanted to learn all about the possible side effects.

Voice-Over:

Who should not receive ENSPRYNG

Do not take ENSPRYNG if you:

• are allergic to ENSPRYNG or any of the ingredients in ENSPRYNG.
• have an active hepatitis B infection.
• have active or untreated inactive (latent) tuberculosis.

ENSPRYNG may cause serious side effects including:

• infections
• increased liver enzymes
• low neutrophil count
• serious allergic reactions

The most common side effects of ENSPRYNG include:

• sore throat, runny nose (nasopharyngitis)
• rash
• fatigue
• extremity pain
• headache
• upper respiratory tract infection
• nausea
• inflammation of the stomach lining (gastritis)
• joint pain (arthralgia)

KITZIA:  

I entered the trial in 2015. So far, my doctor and I are pleased with my results on ENSPRYNG.

I know everyone's experience is different, but I feel it's helping me manage my NMO.

Some NMO symptoms that I still experience are the numbing on my stomach, and my back and stiffness.

I still have bladder issues. I'm not able to empty, so I do have to catheterize. Overall, my treatment plan has been great.

I take ENSPRYNG regularly as prescribed by my neurologist.

I also exercise within my limits. I do cardio, and I also eat right, and I try to get enough sleep.

My husband and my family are very supportive. They help me stay positive. My doctor's very supportive as well, so I do reach out to him for any little concerns or questions that I have.

I don't want NMO to define me. When I have a flare-up, I don't let it take me down or slow me down. But there are times where I do need to take a break, and I just sit down and just stop moving for a while, because I'm constantly moving on the go.

I just want to keep going and live my life, and I want to grow in a family with my husband and just keep moving.

Talk to your doctor to see if ENSPRYNG may be right for you.

What symptoms led to your NMO diagnosis?

Donna: My journey with NMO started one morning on a Memorial Day weekend. I had snowy vision in the bottom half of my right eye.

Kitzia: I was 13 years old, in high school, freshman year, and I started experiencing hot and cold flashes on my hands and feet.

Kila: I lost my vision, and I could not see anything out of my eye.

Donna: Later, I was in our family room, and the vision in my right eye went completely black.

Kila: I started to have a lot of lower back pain. I couldn’t comfortably sit down.

Kitzia: The pain that I was having on my stomach and my back area felt like bee stings.

Kila: Then I started dragging my left leg a lot. I lost sensation in my legs.

Kitzia: My legs eventually gave out, and I was not able to stand up anymore.

Kila: I didn’t have the sensation that I needed to go to the bathroom.

Donna: Yeah, it was pretty scary because you can’t do a whole lot if you don’t have your vision. That’s a life-changing event.

Kila: That was really difficult for me kind of being trapped in my body and not be able to do what I wanted to do.

Donna: It was kind of frustrating because you’re kind of in limbo, don’t know what’s going on. Why is this happening to me?

Kitzia: Before my diagnosis, I was scared. I was confused on what was going on. They did months of testings, and they thought it was MS.

Kila: It was one of those things where they gave me an MS diagnosis, and I knew it wasn’t right.

Donna: I had quite a long journey, frustrating journey, but we did finally get a diagnosis. Once we found out it was NMO, we could move forward with a treatment plan.

What is starting on ENSPRYNG like?

Voice-Over: ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.

How did you start treatment with ENSPRYNG?

Donna: Back when I was diagnosed, there was no approved treatment for NMO.

Kitzia: We tried different treatments, and I would have multiple relapses a year, and it was scary.

Kila: My symptoms were continuing to add on, like I was getting new symptoms, and each time I had a relapse, it was worse.

Donna: My neurologist told me about a clinical trial for a drug called satralizumab, which was specifically for NMO.

Kitzia: When my neurologist mentioned that there was a trial out there for NMO, I was pretty excited about it.

Kila: I was more than willing to try any kind of drug study or any kind of new treatment that was out there because I was not happy with the way my body was.

Kitzia: Of course, satralizumab is now known as ENSPRYNG. I was ready for a treatment like ENSPRYNG, and my doctor thought I’d be a good candidate for it.

Kila: My doctor and I went over the risks and potential benefits of the treatment.

Voice-Over:

ENSPRYNG may cause serious side effects including:

• infections
• increased liver enzymes
• low neutrophil count
• serious allergic reactions

The most common side effects of ENSPRYNG include:

• sore throat, runny nose (nasopharyngitis)
• rash
• fatigue
• extremity pain
• headache
• upper respiratory tract infection
• nausea
• inflammation of the stomach lining (gastritis)
• joint pain (arthralgia)

Donna: My doctor thought that the early trial results looked promising and that he thought I would be a good fit.

Kila: I had a choice. I could stay at home in my chair, or I could try something that could potentially help me manage my disease.

Kitzia: So far, my doctor and I are happy about my results with ENSPRYNG. Of course, this is my experience. Everyone’s experience is different.

Donna: I felt the decision to take part in the trial was a really good one. All these years, I have had no relapses, and I’m living my life.

What are some ways to help manage NMOSD?

Voice-Over: ENSPRYNG is a prescription medicine used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are aquaporin-4 (AQP4) antibody positive. It is not known if ENSPRYNG is safe and effective in children.

How do you manage your NMO?

Donna: One of the things I do to help manage my NMO is try to eat a healthy diet.

Kitzia: It’s very important to take care of myself. What helps me the most is exercise.

Kila: Some days with NMO are different than other days. I just have to be really in tune to my body and kind of know what I can and can’t do.

Kitzia: I’m staying in treatment with ENSPRYNG.

Donna: I’m staying on ENSPRYNG, hoping to prevent another relapse. I have not had a relapse since I started on ENSPRYNG, and I’m hoping to keep it that way.

Kitzia: Before I started treatment with ENSPRYNG, I was having about 3-4 relapses a year. I know how hard it is to come back from a relapse, and I don’t want to go through that again if I can help it.

Kila: I’m happy with my results on ENSPRYNG, and so is my doctor. Of course, my results are my own results. Everyone’s experience is not the same.

Donna: I know ENSPRYNG is helping me manage my NMO.

Voice-Over:

ENSPRYNG may cause serious side effects including:

• infections
• increased liver enzymes
• low neutrophil count
• serious allergic reactions

The most common side effects of ENSPRYNG include:

• sore throat, runny nose (nasopharyngitis)
• rash
• fatigue
• extremity pain
• headache
• upper respiratory tract infection
• nausea
• inflammation of the stomach lining (gastritis)
• joint pain (arthralgia)

Kila: My advice for people with NMO is to make sure you have good communication with your doctor and to have a nice, strong support system.

Donna: I’m a glass half-full kind of person, and having a positive attitude is everything.

Kitzia: I stay positive by listening to music. I do pray.

Donna: You can face hardships crying or laughing, and I choose to laugh.

Kitzia: I can still live my life, I can still have goals for myself, and I don’t let this disease define me.