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.
