Meet Kila
For Kila, NMOSD began with trouble seeing and led to serious
mobility issues. See how she persevered and ultimately found an option
that worked for her.
View Transcript
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 a 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.
NMOSD comes with a lot of questions, but you’re not alone
Watch the short clips below to hear from Kila, Kitzia, and Donna.
Get a glimpse into their personal experiences living with NMOSD, and
find answers to common questions—including why they chose to treat
with ENSPRYNG.
NMOSD symptoms leading to a diagnosis
See what symptoms marked the beginning of their journey with NMOSD
and what finding the correct diagnosis was like.
View Transcript
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.
Starting treatment with ENSPRYNG
Learn what it took for them to finally get the right diagnosis and
why it was so important.
View Transcript
How did you start treatment with ENSPRYNG?
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.
Managing NMOSD
Find out why they chose to treat with ENSPRYNG and what other tips
they have for living with NMOSD.
View Transcript
How do you manage your NMO?
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.