Hear from others about their experience with ENSPRYNG
Your journey is unique, but you're not on it alone. Hear the stories of others living with NMOSD and why they ended up choosing ENSPRYNG.
Hear from others about their experience with ENSPRYNG
Your journey is unique, but you're not on it alone. Hear the stories of others living with NMOSD and why they ended up choosing ENSPRYNG.
In the NM-Know
We asked real ENSPRYNG patients some of the most frequently asked questions from the NMO community.
Is ENSPRYNG safe to use?
Hear how the safety of ENSPRYNG impacted a patient's treatment decision.
Jennifer
Shauna, is ENSPRYNG safe to use?
Shauna
That's a great question, Jennifer. ENSPRYNG is approved to treat adults with AQP4-positive NMOSD. And it has an established safety profile, which basically means that it's been well studied. But as with any medication ENSPRYNG may come with serious side effects that could include infection, elevated liver enzymes or low neutrophil counts. Please watch until the end of this video for additional Important Safety Information.
Super:
ENSPRYNG may cause serious side effects including: infections, increased liver enzymes, and low neutrophil counts. All required vaccinations should be completed before starting ENSPRYNG. Do not take ENSPRYNG if you are allergic to satralizumab-mwge or any of the ingredients in ENSPRYNG, have an active hepatitis B infection, or have active or untreated inactive (latent) TB.
Shauna
So, now that we're talking about safety, what role did it play in your decision to start taking ENSPRYNG?
Jennifer
Before I was ever even on ENSPRYNG, I actually wanted to start taking it because I felt the most comfortable with how its safety was studied. Eventually I spoke to my doctor about it and she explained to me all the possible serious side effects, including infections, as well as the potential for others. But for me since safety has always been one of the most important factors in my decision, talking to her about it made me feel so much more comfortable about starting the medication.
Can ENSPRYNG stop relapses from happening?
Learn how ENSPRYNG was studied and how it can help patients with NMOSD.
Jennifer
Can ENSPRYNG stop relapses from happening?
Shauna
Well, before I get into whether or not ENSPRYNG can help people with NMOSD stop relapsing, let me explain how it was studied in two trials. Study one compared ENSPRYNG alone to placebo, while study two compared ENSPRYNG plus IST to placebo plus IST. And just in case you're not familiar with the acronym IST it means immunosuppressive therapy.
Super:
Some common ISTs include: azathioprine, mycophenolate mofetil, or oral corticosteroids.
Shauna
Both studies showed that more AQP4-positive adult patients were relapse-free with ENSPRYNG at 96 weeks than with placebo. In simpler terms, ENSPRYNG reduced the risk of relapses for those who participated in the study.
Super:
ENSPRYNG alone compared to placebo in Study 1. ENSPRYNG plus IST compared to placebo plus IST in Study 2.
Jennifer
Knowing ENSPRYNG was proven to help reduce the risk of relapses, I know I made the right choice to start on it. I've been on ENSPRYNG for the past year and I have not experienced a relapse so far. And so I'm able to worry less about NMO and worry more about being a mom.
Super:
ENSPRYNG alone compared to placebo in Study 1. ENSPRYNG plus IST compared to placebo plus IST in Study 2.
Why do people prefer injections given under the skin?
Hear from patients about their injection preferences.
Donna
Why do people prefer injections under the skin?
Layla
Well, for me, it's about the flexibility of taking ENSPRYNG at home, which, of course, I was able to do once my doctor trained and approved me to self-inject. If I'm being 100% honest, I need to hype myself up for self injection day. So, I turn on a fun show and I just have to distract myself a little bit.
Super:
ENSPRYNG, if unopened, can be removed from and returned to the refrigerator, if needed. The total combined time out of the refrigerator should not be more than 8 days at a temperature that does not go above 86°F (30°C).
Layla
As you already know, Donna, living with NMO can be super overwhelming, but being able to self-inject with ENSPRYNG makes me feel like I have some sense of control over my situation.
Donna
I agree. I prefer the flexibility I have taking ENSPRYNG at home or on the go. And of course, before I could do either, I was trained and approved by my doctor to self-inject. My husband and I like to travel a lot. Knowing I could take my medication with me wherever I go was a huge factor in my decision to start on ENSPRYNG.
Layla
Yeah, sure.
Donna
On injection day I just like to get it done and not have to think about it until the next dose. But we're all different and that's the beauty of it.
How is it starting on ENSPRYNG?
Hear from other patients about starting treatment with ENSPRYNG.
Melissa
So, Cheena, how was it starting ENSPRYNG for you?
Cheena
Well, first, my doctor trained and approved me to self-inject, which was exciting just knowing I could do it at home. And as you know, starting a treatment can be a little nerve-racking.
Super:
Cheena’s doctor explained the possible serious side effects, including infections, increased liver enzymes, along with the potential for other side effects. Please watch until the end of this video for additional Important Safety Information.
Melissa
Yeah.
Cheena
So, knowing I was able to get virtual support from home was a great help.
Melissa
Well, I agree. I was trained and approved by my doctor to self-inject, too. And then on top of that, Genentech also sent me an ENSPRYNG Welcome Kit, which provided a lot of information and support. And really it was just nice knowing that I wasn't alone in this.
Super 1:
Melissa’s doctor explained the possible serious side effects, including infections, increased liver enzymes, along with the potential for other side effects.
Super 2:
ENSPRYNG is manufactured by Genentech.
Patient Spotlight
Cheena's Story
Connecting to others with NMOSD has made me feel less alone. My name is Cheena, and this is my story.
Layla's Story
Today, I no longer take my sight — or my life — for granted. My name is Layla, and this is my story.
Melissa's Story
I've learned to give myself a break — or a thousand breaks — and find ways to still be me. My name is Melissa, and this is my story.
Jennifer's Story
Even with NMOSD, I've experienced great things, and I know I'm going to continue to experience more. My name is Jennifer, and this is my story.
Dora’s Story
I know now that I’m not invincible, but I’ve learned that I’m more resilient than I ever knew. My name is Dora, and this is my story.
Looking for support outside of the ENSPRYNG community?
There are several advocacy organizations you may want to look into.
Want to share your story?
To learn more about becoming an ENSPRYNG Patient Ambassador and help inform and empower others, call 1-855-415-7460 or email us.
*All applicants go through a screening process. If selected, you may be compensated for your involvement and time. Must be 18 years or older to qualify.
Cheena's Story
If I had to define myself in only a few words: I’d say I’m a self-starter and a go-getter. I see myself as independent and often determined about the things I want in life. I like adventure, travel, and trying to beat my family and friends at Spades or Monopoly. Hello, my name is Cheena, and I want to thank Genentech for sponsoring me to be here today and share my story of living with NMOSD and treating with ENSPRYNG® (satralizumab-mwge).
My journey with AQP4-IgG(+) neuromyelitis optica spectrum disorder (NMOSD) seemed to come out of nowhere. In early May of 2021, I experienced some weakness, numbness, and tingling in my feet. At first, I thought it might be related to a workout or some of my physical activity. As the sensation moved up to my thighs over the next few days, I realized it was time to seek medical care, so I headed to the hospital. They tested me for all sorts of bizarre diseases over the next six days—everything from West Nile virus to COVID and more. They began to expect lupus, systemic sclerosis, and Sjogren’s syndrome.
My mind flashed back to a memory of a doctor in 2019 asking me if I had been diagnosed with multiple sclerosis after looking at my x-ray. Of course, I said no. At the time, I assumed it was a routine line of questioning. I brushed it off and forgot about it. But it came back to me as speculations were made about a potential diagnosis. What had that doctor seen back then that had prompted this question? At the end of that hospital visit, it was still unclear what was happening. After my situation improved with steroid treatment, they sent me home with a suspected diagnosis of transverse myelitis.
Once I left the hospital, things seemed to go back to normal. I assumed my body had healed up and I started thinking I was okay. I didn’t want to face reality. I didn’t want to think something was wrong with me.
Later that month, I was enjoying a holiday weekend at a downtown hotel. I was having a great time with my family and friends when I began to feel tingling and numbness in my legs. I knew immediately something was wrong. The party stopped. We headed towards the elevator but then decided we needed to go to the hospital instead of the hotel room. Once inside the car, my body locked up and froze. It felt like my body was literally shutting down. I could barely speak to tell the driver I needed an ambulance. I started to think this is what it must feel like to die. My hands clenched and formed into immovable knots. I could hear the ambulance driver asking if my hands always looked that way. They rushed me to the hospital.
Although I was alert and oriented, it was as if I could not communicate with my body. Stiff and unwilling to move, tingling everywhere, with locked hands, I could not even change positions in bed. Several tests were ordered— blood, serum, and antibody tests as well as an MRI of my brain. Testing for the AQP4 antibody aided in diagnosing. The next day, a diagnosis appeared in my medical chart that said “acute upper and lower extremity weakness and numbness, secondary to neuromyelitis optica spectrum disorder.” When I first heard about my diagnosis, I don’t think I really digested it all the way. Maybe I didn’t understand what it meant. Or maybe I just wasn’t ready to think too deeply about it.
In the hospital, they gave me medications and hydration. They put me on steroids. Again. The following day, they discharged me. I was told to follow up with the neurologist and rheumatologist for outpatient visits. The steroids worked just like the previous time and things started to go back to normal. But had they?
I followed up with my neurologist, and we talked about more steroids, taking some blood samples, and a medication for nerve pain. My doctor wanted more bloodwork before starting me on a new medication to have a baseline and to be sure I could take certain medications, so it would take time. But she didn’t give me the impression that there were going to be very many options for treatment. I assumed there was plenty of time to think about it. I didn’t know what to do and I needed processing time.
The summer slipped away. Labor Day weekend, I gathered with family. We grilled and I spent quite some time playing in the swimming pool with my daughter and nephew. The next morning, my right eye bothered me, and I had some blurred vision. I thought maybe I had gotten water in it. Maybe it was pool chemicals. Maybe I had played too roughly with the kids. I never imagined that it was somehow related to the two hospital visits I had at the beginning of the summer.
But a few days passed, and it had not returned to normal. My right eye was clouded with shades of gray and my vision began disappearing. When I felt a tingling in my toe, I knew it was all related to my other hospital stays and so I went to the hospital. Again. This time, I was able to tell them I was likely having a relapse with NMOSD. They started me on steroids. Again. I began to understand the steroids were more of a Band-Aid to my symptoms and less of a solution to my condition. And this time they didn’t work. In fact, my loss of vision worsened until it affected both eyes.
I remember thinking I just wanted to see my daughter one more time before I went blind. I needed to hold her and look into her eyes if I was never going to be able to do so again. But in those days of the pandemic, it was not possible to have her with me in the hospital. And though I missed her the most, I missed other things too. I couldn’t tell if it was day or night outside my window. I couldn’t see the plate of hospital food set on the tray in front of me. My mom stayed with me, feeding me, sitting there with me and all my tears. There were a lot of dark thoughts in those days about this change that I thought would be permanent. For the next fourteen days, I underwent several procedures, like plasmapheresis, and took in medicines and treatments. Apparently, the doctor held fingers up in front of me regularly—fingers I couldn’t see. My family and friends prayed that my loss of vision was temporary. We prayed for trust and healing and a path forward. I had to have trust in the bigger picture, but also in the many, many doctors, specialists, and nurses who took care of me. At the time, I was seen by a cardiologist, a neurologist, a rheumatologist—there were so many doctors in and out that I was overwhelmed.
And then one morning I woke up with a new point of view. I had to stop thinking of what things were and had been and had to start thinking of my future. Whatever was happening was going to require some determination on my part. And no matter how it turned out, it was going to be okay. Maybe I would have to adjust to a new normal, but I believed in myself and knew that I could do it. There were no more tears—I remember how surprised the nurses were at that. Something inside me had changed. I stopped mourning my loss and started focusing on what I had instead. I began to socialize with the nurses. I let go of my shame and blame. I let go of my self-pity. I let go of all the “why me?” and stopped entertaining the “ifs.” I may have left the hospital blind after those fourteen days, but I left with a sense of determination.
I wish I could say that my sense of determination never faltered, but that isn’t true. Can you imagine waking up one day without one of your five senses? Could you put on a blindfold and start going about your day, taking care of all the things you normally do? I certainly had moments of frustration—with others, with my daughter, and with myself. I needed constant care. My independence was stripped away, leaving me feeling helpless. My privacy was stripped away. I couldn’t check my bank account online or read my own emails or texts. I had started on a treatment with my doctor, but improvement was mild at best. I began to see shadows of light and dark. But nothing about my vision felt normal.
And then, one day I followed up with my neurologist and she told me about a treatment she wanted me to try—a subcutaneous injection called ENSPRYNG®. She said it was more targeted for NMOSD than my previous medication. I had been going for infusions before I learned about ENSPRYNG. My doctor told me that ENSPRYNG could increase my risk of serious infections, some of which can be life-threatening. She told me vaccines should be given at least four weeks before starting ENSPRYNG. She was so thorough and told me about the potential side effects of ENSPRYNG, such as sore throat, runny nose, rash, fatigue, extremity pain, headache, nausea, and upset stomach.
My doctor provided me with training on how to self-administer the medication, and she eventually approved me for at-home administration. I received supplemental virtual training from a Clinical Education Manager which helped me to feel confident administering the subcutaneous injections myself in the comfort of my home. My doctor made sure I knew to contact her if I ever had a missed or delayed dose. She also helped me figure out the monetary aspect by telling me about a program that could help if I was eligible and giving me paperwork to fill out. Once that was submitted, I was able to have financial assistance through Genentech for the medication.
After I began on ENSPRYNG, I was very encouraged from then on. My relapses had caused me to see the world in shadows and experience life through pain and fatigue. But I have not had any relapses since beginning this treatment. This is just my experience, yours may be different.
For me, everything happened so fast. But I truly believe it happened in perfect order. I know that I chose ENSPRYNG, but I also feel like ENSPRYNG chose me. That might sound odd, but it came to my attention at the perfect moment. I know that having the right medication has made all the difference for me. I would encourage anyone with NMOSD to learn, to advocate for themselves, and find the right treatment for them. Staying in the know about NMOSD has been important for me, too. [Last month] I attended a conference for the Guthy-Jackson Foundation and it was really informative. Connecting to others with NMOSD makes me feel less alone, and I am grateful that there are many other patient advocacy groups out there.
I still think of myself as a self-starter and a go-getter. I think that is what helped me bring up my own determination in those dark moments. I still want to beat my family and friends at Monopoly. As I continue on my journey, I see that my future is bright. The colors that appeared when I began to regain my vision look different than before. It seems as if the colors are somehow magnified and, in a way, brighter. Maybe that’s my vision, or maybe it’s my future. Either way, it looks glorious to me.
Thank you.
Layla's Story
I’ve always enjoyed painting. Before my diagnosis, I would stress about making my paintings look exactly like the thing I wanted to paint. I would get frustrated when things didn’t work out or look the way I wanted. Then I took a watercolor course. At first, I was intimidated by the medium. Watercolor is hard to control. Too much water and the paint spreads all over the page. Not enough and you get saturated streaks. Getting the colors to move in an exact pattern is near impossible, but I’ve learned that in both painting and in life, perfection doesn’t always have to be the goal.
Hello, my name is Layla, and I want to share my story of living with AQP4-IgG(+) neuromyelitis optica spectrum disorder or NMOSD and being on treatment with ENSPRYNG® (satralizumab-mwge). Before I was diagnosed at age 26, I knew very little about this disease. That’s why I’m sharing my story today: to help others with NMOSD.
As the second born to two immigrant parents, I have always felt it was my duty to make my parents proud. In all the sacrifices they made for me and my siblings, I felt it was the least I could do. In school, I strived to get straight As and felt I had to perform every task perfectly. After I graduated from college, my goal was to land a good-paying job and climb the career ladder, no matter which career I ended up choosing. I was ambitious. My first job was working part-time at my university, and I was always looking for new and exciting experiences. In 2019, when my husband and I were given the opportunity to move to Japan to teach English, we jumped at the offer. Our lives were just coming into focus. I perceived our future as a series of logical next steps in a straight line: establish successful careers, buy a house, build our retirement savings, and maybe even start a family. Little did I know that the lines on the map of the future I had imagined were about to blur—literally.
The term “optic neuritis” first entered my life just three months after we moved to Japan. It started as a dull achy pain behind my eyes that became a sharp pain when I looked right or left. It dulled out my peripheral vision, and the lines of the walls and on my computer screen looked wavy. I saw an ophthalmologist who concluded it was a mild form of optic neuritis and out of his scope for treatment.
As the day went on and my symptoms grew worse, I started to lose color vision, so I went to the hospital that day. They referred me to a neurologist who ordered an MRI. When the images of my brain came back normal, the neurologist could only conclude that I must have an isolated incident of optic neuritis and that he had no clue about the cause.
By this time, I’d looked up optic neuritis online and read it was often the first sign of multiple sclerosis (MS). The possibility of getting diagnosed with a neurological autoimmune disease while abroad was the worst thing I could imagine. The neurologist predicted the pain and vision loss would improve on their own. But the anxiety and lack of a confirmed diagnosis consumed me after that—I felt something was very wrong.
Over the next few days, the pain did finally go away, and my vision returned to normal. The doctor’s prediction seemed to be correct, and I didn’t have symptoms again for two years. At last, my fears of developing multiple sclerosis were behind me.
When my husband and I returned to the U.S. in 2021, we were saving up to buy a house and were excited about starting a new chapter in our lives. Then, six months later, I began to have that old, familiar feeling behind my eye. I had pain on and off again for a few months, but the pain never really developed into much else. I went to a neuro-ophthalmologist and was told it was because I had optic nerve drusen, calcified nodules along the optic nerve, and that the pain was caused by dry eye. Nothing to worry about. Deep down, I knew the diagnosis didn’t seem right to me.
Then, in June 2022, I began to lose sight in my right eye—this time, right in the center of my vision. When I told the neuro-ophthalmologist I had lost my vision, she was still unconvinced it was optic neuritis because I hadn’t lost any color vision this time.
Finally, my doctor referred me to a retina specialist whose earliest appointment was three weeks away. It didn’t feel right for me to wait this long while I was slowly losing my vision day by day. I felt my anxieties and symptoms were being dismissed, and even while partially blind, I felt it was difficult to get the doctors to consider my condition a serious matter.
When 90% of the vision in my right eye was shrouded in darkness, I couldn’t take it anymore. My family rushed me to the ER, and after asking me about my medical history, the doctors told me there was a possibility it could be MS, my worst fear. Thinking back to my early internet searches in 2019, I asked them, “Could this potentially be NMOSD?” The doctor told me that, yes, NMOSD would be tested for, too. In retrospect, I am grateful the doctors had NMOSD on their radars, considering so many go undiagnosed for years after MS is ruled out.
I was hospitalized for five days and put on IV steroids—standard treatment for what I now know as a relapse. After a few weeks of waiting at home, praying for my vision to return, they called and confirmed I had NMOSD. I had been tested for a type of antibody that is often associated with NMOSD that targets a protein in our body called AQP4. The levels were so high that they knew I was definitely AQP4 positive. After three long years, I finally had a diagnosis. My early internet searches about MS in 2019 led me to believe NMOSD had a better prognosis, so at first, I was relieved. I had finally gotten an answer—and it wasn’t my worst fear after all. But the day I received my diagnosis, June 14, 2022, I realized there was no point in comparing the two conditions. With more research, I realized my life would look much different with NMOSD. I was devastated.
The doctor referred me to an MS specialist who also works with people with NMOSD. She took the time to listen to me and validated my experiences. We had a lengthy initial appointment where she answered my questions and told me about the different treatment options for NMOSD. Then she gave me pamphlets to review at home.
One of the NMOSD pamphlets went into detail about various statistics for this disease. Reading that pamphlet put into perspective just how serious my condition was, and it validated my concerns and the anxieties and fears I had experienced.
Looking back on that year and the fight to get diagnosed, I became angry. I was angry that I wasn’t tested for an autoimmune condition in 2019. I was angry that I had to stand up to doctors to be believed. But most of all, I was angry that my body had betrayed me and my ambitions. I felt like it was the end of my dreams and life as I knew it. I felt my goals were shattered because I thought achieving success would require me to push myself, and the inevitable stress would cause my condition to get worse. Just like that, my idea of a perfect life was put on hold.
Fortunately, at my follow-up appointment, my vision had mostly returned. My doctor and I discussed the treatment options, and we decided that ENSPRYNG would be a good option for me. She told me that it was a subcutaneous injection therapy given under the skin that would be administered every four weeks after taking three starting doses in the first month of treatment. And I learned if my doctor approved me for self-administration, I could be trained by my doctor to administer the subcutaneous injections myself. Of course, my doctor explained the possible serious side effects, including infections and increased liver enzymes. We also discussed the potential for other side effects of ENSPRYNG, including sore throat, runny nose, rash, fatigue, extremity pain, headache, upper respiratory tract infection, nausea, inflammation of the stomach lining, and joint pain.
After my doctor prescribed ENSPRYNG, she trained and approved me for self-administration. My doctor made sure I knew to contact her if I ever had a missed or delayed dose. Soon, I got a call from a Patient Navigator who sent me a starter kit. She helped put my mind at ease by answering all my questions. My Patient Navigator was awesome. I loved that I had a dedicated person I could call or text with questions. She set me up with a patient support program and scheduled an appointment for me with a Clinical Education Manager (CEM), who provided me with supplemental virtual injection training. After my doctor said it was okay for me to self-administer ENSPRYNG, I wasn't sure if I could do it. I reminded myself that there are other patients out there with other chronic conditions that give themselves their own subcutaneous injections every day. That thought really helped me gain perspective and overcome my fears. If they could do it, so could I!
When I started taking ENSPRYNG, I experienced some joint pain and pressure in my eyes and sinus area, but these symptoms have since gotten better. Over time, I experienced fewer relapses, which had been impacting my vision. I feel so fortunate that I am still able to see. Now, I do experience some fatigue on the day I administer my injections, but remember, this is just my experience, and everyone is different. Please remember that everyone responds differently to treatment, and you should talk to your doctor about what's right for you.
As I became more comfortable with my diagnosis, I searched for NMOSD patient advocacy groups to get more information from other people living with this disease. Turns out, there are a lot of great NMOSD support organizations out there! That’s when I found the Guthy-Jackson Foundation and learned about their art therapy classes. These online classes encourage mindfulness, being present, and trusting the process. Joining those classes reignited my passion for art and helped me discover a new way to look at my life. This is where I learned to work with watercolors.
In time, I realized it wasn’t important that my paintings resembled anything in particular. Now when I paint, most of the time it’s brush strokes and experimenting with the medium. If I make a mistake, I go with it. It's helped me let go of my anxieties and my need for perfection. Sometimes with watercolor, some of the most beautiful paintings happen when I am kind to myself and trust the process enough to simply let go.
Like painting in watercolors, life is unpredictable, and you can’t always control what happens. A lack of control can sometimes be a good thing—you begin to appreciate the little things in life and the moments that come with the unexpected. We learn, we grow, and we go on.
Today, I no longer take my sight—or my life—for granted. I try to take things one day at a time and focus on what I can do instead of what I can’t. With this diagnosis, things might appear different, and life may not be exactly what we had in mind, but I’ve found I can always find beauty in the things I discover about myself and in this life after diagnosis. This is my life. It’s not easy and certainly isn’t perfect, but I’ve come to appreciate all that comes with it—and that is what makes it worth living.
Thank you.
Shekita's Story
If I may be so bold, I would say I am a force to be reckoned with. When people say things can’t be done, I say that’s not true. You just got to do them a little differently than you planned. Living with a chronic illness has taught me that. Hello, my name is Shekita, and I want to thank Genentech for sponsoring me to be here today and share my story of living with AQP4-IgG(+) neuromyelitis optica spectrum disorder (NMOSD) and treating with ENSPRYNG® (satralizumab-mwge).
I’ve always kept busy. Growing up, I was the captain of the dance team, a member of the National Honor Society and the National French Society, played in a local youth symphony, manager of the school bookstore, and volunteered with the Big Brother Big Sister program. I was the person who knew how to get stuff done.
I later met and married my husband. We’ve been together for [22] years, and I’m proud to say I’m a wife of an Army vet. We have two children together, who are both [young adults] now. Prior to my diagnosis, I used to run operations and district management for my company, a role I did for over 15 years.
In January 2013, I began experiencing nerve pain, back pain, numbness in my fingers and toes, along with migraines. The nerve pain was so strong that I almost blacked out while driving with one of my children in the car. A month later, the nonstop vertigo and vomiting began. It was so bad that I didn't eat for over a month and lost over 20 pounds. Six hospital visits and a neurologist appointment later, I was diagnosed with benign paroxysmal positional vertigo (BPPV).
Being the entrepreneurial spirited person I am, through all of this, I didn't let it stop me from taking a position with the company I was working for as an owner-operator. Before I moved across the country for this new position in Washington state, I remember being so sick coming into the office every day. I’d come in, close my door, lay on the floor, and conduct my work from my laptop while puking in a bag. The whole time, I was still managing over 1000 employees. After four years in Washington, the company relocated me to Texas to take over a district. Keep in mind, I was left battling uncontrollable rapid eye movement, balance issues, gastrointestinal issues, and random swelling that I didn't have answers to after the BPPV diagnosis. I was convinced it was just vertigo and that’s it. I just pushed through and dealt with it like I did everything else.
But just “pushing through it” sometimes isn’t enough. I thought my diagnosis was accurate enough to secure the right treatment for me. For a while, I was ok. I wasn’t back to my usual self, but I wasn’t missing work, and I was able to be there for my kids. That was good, right?
February 12, 2020, I was at work, as usual when I had to go home early. I had a migraine that was so severe, I became nauseated, had hiccups, and pain in the back of my eyes. I'm not the type of person who calls off of work but the next day, I couldn't even get out of bed. I started making frequent trips to the ER. As expected, I was getting sent home...constantly. The first couple of weeks, I lost 15 pounds, and before I knew it, I was cross-eyed with double vision. Shortly after, I started having a strong loss of sensation in my legs. It felt like I was becoming paralyzed, losing sensation in my abdominal area and experiencing bladder and bowel dysfunction. By this time, I was 40 pounds down within a month. I even had a weird vibration in my voice when I talked.
I think one of the worst symptoms I experienced was the nerve pain. It started in my face and began traveling down my neck. I remember going to the hospital screaming and crying in agonizing pain and they told me it was trigeminal neuralgia. I'll never forget the day, barely any sensation in my legs, I managed to get on my knees and prayed to God...face covered in tears, eyes swollen, barely able to breathe...begging for someone to make it stop or take me away. I laid there because I couldn't get up, for hours, until someone came and helped me back onto the bed. Any hope I had that doctors would ever figure out what was going on was completely gone.
Meanwhile, while all of this drama was going on, my husband hardly left my side. It didn’t matter what time it was. If I needed to go to the ER, he just got up, put on his shoes and coat, and drove me to the hospital. Between 2013 and 2020, this had become a routine for us.
During this time, my children were about nine and ten. I remember at one point, laying in the hospital bed, my son came into the room with tears running down his face. I must have been a sight to see because he was afraid to even get close to me. But it wasn’t just the look on my son’s face I remember. I remember he asked me, “Mom, are you going to die?” I could barely utter a response because the room was spinning; I felt so weak. But it was that moment that confirmed what my motivating factor was–my children.
With all this going on, I realized what I was experiencing was very similar to what happened in 2013. After about another five hospital visits of perplexed doctors, I was directed to go to an Ear, Nose, and Throat doctor. Who would have ever thought that this visit would be a blessing in disguise. The second the doctor saw me, she told me to go back to the ER immediately. She even called the ER so when I got there, they had a bed ready for me and sent me for several MRIs. A neurologist finally came to my room and did a spinal tap and a blood test. They started me on three days of IV steroids, discharged me, and sent me home with a ton of medications. It took a week for the neurologist to see me over a televisit, during which she delivered the heavy blow. I tested positive for the Aquaporin-4 antibody which meant that I had a rare disease called neuromyelitis optica spectrum disorder or NMOSD.
When my neurologist said “rare disease” and “incurable,” I didn’t hear much after that. I felt like I was thrown into the vacuum of space. She was explaining preventative treatment by the time I came out of the trance. I didn’t do any research on the diagnosis until my next appointment when I had a clearer head. We worked out a treatment plan, but it wasn’t perfect. I eventually had to leave my job, which was a difficult transition for me. It's taken me three long years of ups, downs, grieving, and everything under the sun to come to terms with this diagnosis.
I began treatment with infusions but decided to do some research about other treatment options. Through my research, I learned about a subcutaneous injection given under the skin called ENSPRYNG and decided to ask my neurologist about it. My neurologist said it was an approved treatment for AQP4 positive NMOSD. My doctor explained the possible serious side effects, including infections and increased liver enzymes. We also discussed the potential for other side effects as well. I didn’t experience any side effects, but this is just my experience and others may be different.
My doctor provided me with training on how to self-administer the medication, and she eventually approved me for self-injection. I received supplemental virtual training from a Clinical Education Manager, which helped me to feel confident administering the subcutaneous injections myself in the comfort of my home. My doctor made sure I knew to contact her if I ever had a missed or delayed dose. She also connected me to a patient support program that could help if I was eligible and gave me paperwork to fill out. After it was determined that I was eligible, I received help with copay assistance for the medication.
With ENSPRYNG, I appreciate that I can do my treatment at home. My pharmacy sends me refill reminders and helps me arrange prescription shipments to my house. It may seem like a small factor, but for me, having the ability to choose and self-inject gave me back the feeling of independence. My doctor and I have been pleased with ENSPRYNG’s ability to manage my attacks. Keep in mind this is just my experience, and others may be different.
Yes, this disease has slowed me down a lot, but it hasn't stopped me. Keep in mind, it takes a LOT to stop me. As bad as NMOSD is, it's taught me so much about the importance of just living. I still enjoy doing makeup, cooking, spending time with my family, and most importantly, I’m still me. NMOSD has made me realize the path I need to be on in my life, and for me, that looks like advocacy and activism. I’ve turned to social media as a way to amplify my voice and tell my story as a NMOSD patient on treatment with ENSPRYNG.
So, if I could leave you with something, let it be this. It’s important that we stay persistent in the journey because what we do today, matters tomorrow.
Thank you.
Melissa's Story
In 2016, I was an ambitious 28-year-old living in New York City. I had just started a dog-walking business and was on my way to becoming a successful entrepreneur. I walked, boarded, and sometimes offered doggie daycare in my area. Business was great! I loved my clients, and they loved me. I was also pursuing my passion for writing and had just completed a short, dark comedy that I was going to enter in a film festival. Little did I know that my life was going to have a plot twist that I did not anticipate.
Hello, my name is Melissa and I want to thank Genentech for sponsoring me to be here today to share my story of living with AQP4-IgG(+) neuromyelitis optica spectrum disorder (NMOSD) and being treated with ENSPRYNG® (satralizumab-mwge).
I was in the process of editing my film when I began to experience numbness and tingling on the left side of my body. I didn’t think much of it until I woke up the next morning and felt a sharp pain in my neck. It felt like I slept wrong, so I brushed it off. But the pain was constant. My cousin is a nurse practitioner, so I asked her for advice. She gave me a few methods to relieve the pain but soon my left hand began to close, and my left leg began to drag. I still took on clients when I could. I thought maybe I was just overworking myself. I was in complete denial that this might be something serious.
Over the next six months, my symptoms grew worse. I finally went to my general practitioner, and her advice was to lose weight. As much as I wanted an easy answer, my doctor’s advice didn’t make sense to me. I wasn’t even big then.
Soon, I couldn’t hold onto the dog leashes and my legs would wobble when I walked. One night, I woke up and it felt like my back was on fire. I called my cousin again and she told me to see a chiropractor. The chiropractor didn’t want to touch me and urged me to go to the hospital. At this point, I was getting scared and had no idea what could be happening to me.
I went to the emergency room, and they quickly put me on steroids to stop the inflammation. Then they began conducting tests to find out what was causing these symptoms. I had a lot of exams and a spinal tap. After the steroids, I started to feel better, and I was able to go home after a few days. But the relief was short-lived.
I began experiencing extreme spasms. My left leg and arm would lift on their own, so back to the hospital I went. This time, the doctors thought I had MS, but after an AQP4+ test they changed my diagnosis to NMOSD.
My cousin tracked down a neurologist, and after seeing her, she sent me back to the hospital due to my spasms. This would become my cycle for the next four months. Hospital, home, hospital. The doctors would try a variety of treatments that did not work, and I’d be back in the hospital again! My last hospital stay was a month long and my symptoms put me in a wheelchair.
By this time, I was exhausted—and so were my friends, family, and even my doctors. After so many life-altering hospital stays, I felt anxious anytime I entered a hospital. My doctor continued to treat my symptoms with MS and rheumatoid arthritis drugs, which provided some relief, but we kept looking for options.
Around this time, things felt bleak, but I knew I had to figure out a way to reduce the inflammation. I began reading about how animal-based foods might cause inflammation, so I started on a vegan diet.
After I switched to a plant-based diet, I discovered that if I slipped up and ate meat, my symptoms became worse. This was my personal experience and it may not be the same for everyone. I started experimenting with different plant-based recipes to make my diet more interesting. I began cooking like my grandmother did, using a lot of cilantro, onion, garlic, and other seasonings that are traditional in Caribbean cooking.
But despite all my efforts, my condition continued to progress. I began to go blind. I was terrified. I thought I was going to die. If my life was a film, at this point, it would have been a tragedy. I didn’t want to keep going but my cousin would not let me give up.
Thanks to her, I kept looking for answers and tried to do whatever I could to improve my condition. Living in New York was stressful and stress triggers my symptoms, plus the cold winters made my bones ache, so I decided to move back to Miami. I grew up there and my mother and grandmother still lived there, so it was a logical next step. The other bonus is that Miami has a big vegan community, and I started hanging around people who really knew how to cook vegan food. Eventually, I partnered with a vegan chef, we acquired a food truck, and started selling our vegan meals.
Being in Miami not only brought me back to my roots, but it provided me with the opportunity to work with a new doctor. I found a great neurologist and she went searching for treatment solutions. She really listened to me and made me feel heard.
At one of my visits, she told me about ENSPRYNG and we discussed whether it would be a good treatment option for me. She told me that it was a subcutaneous injection therapy given under the skin that would be administered every four weeks after taking three starting doses in the first month of treatment. I learned that if my doctor approved me for self-administration, I could be trained by my doctor to administer the subcutaneous injections at home. Of course, my doctor explained the possible serious side effects, including infections and increased liver enzymes. We also discussed the potential for other side effects.
I liked that ENSPRYNG is taken once a month and that I could potentially administer the treatment myself at home. The fewer hospital or infusion center visits for me, the better! I already had experience with self-administering subcutaneous injections under my skin from previous treatments I’d been prescribed, and I was excited and relieved to try a treatment that was specifically targeted to treat my illness, AQP4-IgG(+) NMOSD. After my doctor approved me for self-administration and trained me on how to properly administer the subcutaneous injections, I felt confident to administer my own treatment at home.
I started on ENSPRYNG in March 2022 and did not experience any side effects. Occasionally, I still experience brief episodes where my symptoms get worse. And there are times when I’m just weak, but overall, with a reduction in my relapses, I feel like I can do a little more—and for a person with an autoimmune illness, every little bit goes a long way. I’ve found that ENSPRYNG is a treatment that fits into my schedule and I feel like I have more control over my life and my NMOSD. Of course, this is my experience, and everyone is different.
Although my dream of becoming a comedy film writer was put on the back burner, I’ve found that being a vegan chef is a great creative outlet. Not only did my recipes help me create a healthier lifestyle, but they’re also helping other people eat healthier too. In fact, I was honored to be a 2021 recipient of a grant from the James Beard Foundation Food and Beverage Investment Fund for Black and Indigenous Americans.
Being diagnosed with NMOSD wasn’t easy, and I still struggle with the physical and mental challenges that come with this disease. The best way I know to stay mentally fit is to keep busy. I’ve learned to listen to my body, avoid the heat—which can be a challenge living in Miami—and continue to eat clean. I try to get outside when it’s cooler in the evenings. As long as I’m a productive human, that makes a big difference. I like that I can help my grandmother and my mom. Staying true to my passions—like my family and cooking—helps me make peace with my condition and find other ways to manage it.
When I was first diagnosed with NMOSD, I felt robbed of the life that I thought I’d have. Today, I’ve learned to give myself a break—or a thousand breaks—and find ways to still be me. Today I can find joy in the simple things that many people take for granted like walking or opening my hands, which I couldn’t do during my relapses. I can find joy in the people who love and support me when I have my bad days. Sometimes that’s where the magic is.
Jennifer's Story
In 2012, I had just started what would be a six-year dedication to working in the military. I was extremely active, and work was always busy! I worked on the flight line, where all the mechanical magic happens—aka airplane maintenance. I particularly worked on the C17 aircraft. Usually, I would arrive at work early. It’s funny because I always struggled with being on time, but during my time in the military, I was never late. Talk about fun—you might not think it was, but I loved it. The everyday expectations of the military kept me busy—but what I didn’t know was that it all would soon change.
Hello, my name is Jennifer, and I want to thank Genentech for sponsoring me to be here today to share my story of living with AQP4-IgG(+) neuromyelitis optica spectrum disorder (NMOSD) and being treated with ENSPRYNG® (satralizumab-mwge).
There was a day when I had gotten sick with flu symptoms. Naturally, I didn’t worry too much about it because it was just that time of year. But when I woke up a few days later, I felt like my entire body was on fire. The whole left side of my abs felt like they were burning from the inside out. This would happen constantly—the burning was characterized by a sensation of releases and buildups. I didn’t know that these were spasms at the time. It was like when you’re about to have a charley horse and you can feel it coming. You brace yourself but can’t massage it out; you just have to sit through it.
This happened while I was working as a shipping and receiving manager at a warehouse. There weren't a lot of people at work that day, so I felt like I had to show up despite my pain. During my workday, I felt one of those spasms coming on, so I ran off to the break room just in case I needed to scream. My coworker came in to check on me after and noticed I was sweating and out of breath—it was only after that I opened up about the pain I was feeling. They recommended I see a chiropractor because it sounded like I had pinched a nerve. I agreed and made the appointment within the week. At my appointment, they treated me for a pinched nerve, but nothing worked! I thought, at the very least, that would relieve some of the pain, but my pain didn’t go away. I had a muscle spasm during the session. The chiropractor decided that it was probably a kidney stone and recommended that I go to the hospital.
I went to the ER that night. My pain was so unbearable that my dad had to drive me there—I couldn’t move. The hospital determined it was not a kidney stone. For the first time, I did not have an explanation for my symptoms. But the hospital gave me a steroid that stopped the spasms and gave me enough relief to continue living my life.
I got married in December 2015, but what was supposed to be one of the happiest times of my life, was soon followed by more spasms that caused me to go back to the doctor in 2016. It was then that I was diagnosed with multiple sclerosis (MS).
I knew in my heart that it wasn’t MS because I had friends with MS and the way they described their symptoms were so different from what I was experiencing. With my optic neuritis attacks specifically, they were traumatizing. My vision would go away in one or both eyes and then, as time passed, it would come back . It could be like a smudge on my eye or just extremely blurry vision. When it happened, I went to a dark place mentally. I often wondered if I was ever going to see my kids again or see the things that I enjoy. I was a newlywed but couldn't enjoy my new married life because I was suffering from attacks that I didn't fully understand.
I felt unheard and misunderstood and thought there had to be another answer, but I couldn’t explain it to anyone because I didn’t fully understand it myself. I was hesitant to start treatment because I had doubts about my MS diagnosis.
In September 2016, as soon as I finished my master’s, I found out I was pregnant with my daughter, Faith. She was born on July 4, and because my husband and I met in the military, we call her our “Freedom Baby.” My perspective on life completely changed when I had her. Up until she was born, I was living for myself. Then, I had a baby who depended on me and couldn’t live without me—I needed answers.
In 2018, I had another attack. I had just finished taking pictures of my daughter to celebrate her turning eight months old when a headache came on as well as an optic neuritis attack that I still haven't fully recovered from to this day. I don’t remember much else because I blocked it out. I didn’t go to the doctor that day; I was naïve and thought it would clear up like the rest did. I was afraid that day, but as a new mom, I felt like I had to roll with the punches.
A month and a half later, I finally went to the doctor because at this point that headache had lasted for a month straight without subsiding. But ironically, as my appointment date got closer, I started feeling better. My neurologist wasn’t sure how to treat me at that point, so I let her know I was okay and moved on from that moment. I had a baby to take care of, and that was my main focus.
I lived with my untreated MS diagnosis until 2021. I didn’t want to be treated for MS until I got a second opinion. I had another optic neuritis attack that year and went to see my neurologist as soon as I could. She then referred me to a different clinic with more resources and a different neurologist, as well as a neuro-ophthalmologist. The first appointment I had was with the neuro-ophthalmologist. He asked me if I had ever been tested for NMO. I told him no but when I researched it that night, everything clicked. I felt like this was what I was dealing with! Then came my next appointment with the new neurologist.
It was wonderful because the doctor I was originally supposed to see wasn’t able to make the appointment, so I was transferred to the NMOSD specialist I didn’t even know they had! Upon meeting her, she explained NMO to me and explained what tonic spasms were. I finally felt heard! The clinic took eight or nine vials of blood and conducted several tests including an AQP4 blood test, which eventually came back positive. I also had an MRI because my cervical spine had a lesion on it. I ended up getting diagnosed with AQP4+ NMOSD. For the first time in seven years, I felt like I had a name for what had been tormenting me.
I took a deep breath because my determination to figure out what was going on had finally helped. The clinic gave me treatment options and resources—I didn't have to go through this alone anymore. I had answers and a correct diagnosis. I could now define it, instead of letting it define me.
I tried a few treatment options, but they weren’t a good fit for me. If this journey has taught me anything, it has been to follow my gut. I went to my neurologist to discuss other treatment options. I spoke to my doctor about ENSPRYNG, a subcutaneous injection given under the skin. My doctor and I described the risks and benefits of ENSPRYNG to my neurologist. She said it was an approved treatment for AQP4+ NMOSD. She explained the possible serious side effects, including infections and increased liver enzymes. We also discussed the potential for other side effects as well. I’ve been on treatment with ENSPRYNG since the beginning of 2023 and am continuing to power through my journey. My doctor and I have been pleased with ENSPRYNG’s ability to manage my attacks. Keep in mind this is just my experience, and others may be different.
After getting approval and training from my doctor, I now administer the subcutaneous injections myself at home. I was able to work with a Clinical Education Manager virtually from home for additional injection training. My doctor made sure I knew to contact the clinic if I ever had a missed or delayed dose. Genentech also sent me an ENSPRYNG Welcome Kit when I started treatment, to provide me with more information and support. Before every injection, I use this kit to brush up on the instructions and take any notes I might need to. It's extremely helpful and I use it all the time!
To ease my discomfort with the needle, I make sure that I do something fun on the day I administer my injection. Sometimes, I’ll go shopping, hang out with my children, or go to my favorite neighborhood coffee shop. And if I want to just take a nap, I’ll take a nap that day instead. I give myself the room to make that day as calm and joyous for myself as possible. Since starting treatment, I have experienced a reduction in relapses. I remember watching TV with my family and thinking… I need to appreciate this because I’m so glad I can see it. And I allowed myself to relax because I hadn’t had an attack in a long time.
Being diagnosed with NMOSD wasn’t an easy journey, and I still can’t do some of my favorite things—like running—the way I used to. I have less energy than my friends, and sometimes it's hard for them to understand. They’ll say things like “We’re getting older!” I’m [37]! I don’t like to make excuses, but I’ve learned to take it easy. Living with NMOSD for seven years without treatment was difficult, but it also allowed me to learn so much about myself and my body. I can now read the signals my body is giving me.
Today, I’ve learned to breathe and give myself a break. I have a fantastic support system between my husband, stepson, and neurologist. I know my husband didn’t sign up to be a caregiver, but he has stepped up in ways that I am eternally grateful for. When I had the optic neuritis attack after my daughter’s birth, I had to stop breastfeeding and needed a lot more help with her. With his help, I was able to focus more on getting better. My stepson is [19] and has seen me go through things that no child should see a parent go through. But he’s been wonderful, and even though he can’t always help, just having him there is enough. Sometimes, all you need to know is that you’re not alone. My neurologist hugs me every time I visit her. She is pleased with my results on ENSPRYNG, and so am I. I don’t like the fact that I have a neurologist, but if I have to have one, I’m so glad it’s her.
My advice to those newly diagnosed with NMOSD would be to not stop living. I realized a few days ago that I have been so angry about the things that have happened to me. I feel like so much has been stolen from me, and I never even realized I was grieving those things until I talked to my friend who just lost both of her parents. She articulated her grief in a way that made me realize I was feeling those same things. Facing that grief, allowing myself to be mad sometimes, and choosing gratefulness has really helped. Even with NMOSD, I've experienced great things, and I know I'm going to continue to experience more. This diagnosis doesn’t define you. We are better than that.
Thank you.
Dora’s Story
Hello, my name is Dora, and I’d like to share my story. It’s important to note that while I am currently employed as a working pharmacist and functional medicine nutritionist, I will be sharing my experiences as a Patient Ambassador living with AQP4-lgG(+) neuromyelitis optica spectrum disorder (NMOSD) and treating with ENSPRYNG® (satralizumab-mwge). I will not be offering or providing medical advice. You should speak to your doctor for questions relating to your health and treatment options.
When you’re young, you think you’re invincible, right? Well, that’s how I felt at 34, living the life that my hard-working, immigrant Chinese parents had always wished for me. I had my dream job working as a pharmacist with a family health team. I got to teach and help doctors, nurses, and patients solve problems rather than having to check prescriptions and count pills all day—which is what most people imagine when they think of a pharmacist. I even had my own office and was able to work regular office hours.
Thanks to my job, I was making enough money to live in the bustling downtown of Toronto, Canada with enough left over to save a little for the future—something my parents always reminded me to do. I had an equally successful boyfriend to share my life with and a fluffy dog named Diego that I loved doting on. We ate out at nice restaurants, traveled around the world, and pretty much did whatever we wanted to. Life was carefree and fun.
Until one day, when my eyesight mysteriously disappeared.
It started with pain. My left eye hurt whenever I looked too far to the left or the right. Of course, being young and “invincible,” I figured it would go away the next day. It didn’t. A couple of days later, a black curtain came down over that eye, and it was then that I knew this was a problem. If someone I knew came to me complaining about problems with vision, I would tell them to head straight to the emergency room. So that’s exactly what I did.
I remember sitting alone in that small room, perched on that big, black, foreboding chair—the kind you’d normally see in an optometrist’s or eye doctor’s office. I saw one doctor after another throughout that day until, finally, I was in the care of a young neurologist and his even younger resident. They explained to me that I had optic neuritis and offered up corticosteroids for treatment.
Initially, I refused the treatment. I was aware of the possible side effects of steroids, and I was determined not to expose myself to them. The doctor mentioned that the optic neuritis could go away on its own, so I just ran with that. In the meantime, he scheduled an MRI to rule out multiple sclerosis (MS) and called a few of his colleagues at the big teaching hospital downtown. Miraculously, especially by Canadian standards, I was done with the MRI and sitting in the office of one of the city’s top neurologists in less than a week. Evidently, when someone is losing their eyesight, it’s a big deal. So, things happened surprisingly fast.
But by the time I met with the neurologist, the pain had gotten so bad that I could barely move my eye without yelping. I had to turn my whole body if I wanted to look at something that was not directly in front of me. More worrisome, though, was that the black curtain, which had previously covered only the top half of my vision, had now completely descended over my left eye. It was entirely blind. So, when my neurologist advised a week of IV steroids, this time I said yes. And to my relief, my eyesight improved steadily over the course of a couple of weeks.
I thought to myself, See? I was right. Of course it would get better! Finally, proof that I’m invincible. I can simply go back to my normal life. Everything is just fine.
Except, as you could probably predict, it wasn’t.
Just as my vision seemed to be improving, a foggy haze settled over my left eye. Unfortunately, due to the holiday season, an out-of-town neurologist, and my general ignorance of the significance of the situation, I let it go for a couple of weeks without getting it looked at. There it was, that pesky sense of invincibility, back again.
By the time I saw my neurologist again and restarted on steroids, that foggy haze in my left eye had completely clouded my eyesight. And since then, it has never left. I have permanent damage to my left optic nerve and have been blind in one eye for 15 years.
My neurologist had run all the usual tests, looking for a diagnosis to attribute my optic neuritis to, but everything came back negative. Considering my ethnicity as an Asian woman, he also had the insight to test me for NMOSD. He conducted a blood test checking for AQP4 antibodies, but again, the test came back negative. He nonetheless offered up preventive chemotherapy as an option, but I think you can predict what my answer to that was: “Nope.” I decided I would take my chances.
Over the next couple of years, I got used to living a monocular life. I stopped driving for a while because I found myself constantly slamming on the brakes, but eventually, it felt safe enough for me to drive again. I took stairs more cautiously as I had to relearn my sense of depth. Sadly, I had to give up 3D movies—though that was probably a good thing since they usually charged double for those showings! Over the next couple of years, things gradually improved, and I felt like I was living the good life again. My partner and I decided we were going to start trying for a family, and my neurologist was so pleased with my progress that he discharged me from his care. I felt like I was back on track.
That is, until a month later, when my invincibility failed me yet again.
I was called for jury duty. I was off work for the week, spending my time sequestered in a large room, full of strangers, waiting to be chosen. I spent my days lazily reading and snacking, but I started to notice an aching, painful sensation circling my torso, around where my bra band was. When I got home every afternoon, I couldn’t wait to take my bra off and put on a loose T-shirt because my skin felt so sensitive. I secretly hoped that it was breast sensitivity due to early symptoms of pregnancy. Sadly, that was not the case, because a couple of weeks later I felt some tingling in my left leg, and then I started to get waves of what felt like electrical shocks running down my spine. I knew it was time to go back to my neurologist.
This time, my MRI showed lesions on my spinal cord. This meant I now had the two symptoms that were required for a diagnosis of NMOSD: optic neuritis and acute myelitis. My doctor decided to conduct another blood test, and this time I tested positive for the AQP4 antibody. This was the final nail in the proverbial coffin. I was officially diagnosed with NMOSD.
It was now real. I no longer felt invincible.
After my initial diagnosis of optic neuritis, I had done extensive research and learned all I could about the different conditions it’s often associated with, including NMOSD. However, it was 2011, and at that time, there was not much information available about NMOSD. My research helped prepare me for the news of my diagnosis, but I still felt a lot of uncertainty. I was ready to work with my doctor to come up with a treatment plan right away; however, there weren’t many NMOSD treatments available, particularly in Canada, so I took what I could get. This time, when my doctor suggested chemotherapy, I didn’t decline.
After a short period of grieving and tearfully sharing the news with my parents, my brother, and my best friends, my now-husband and I continued with our lives and the trajectory we were originally on. But this time, everything was tainted by the specter of NMOSD. As ominous as that sounds, this wasn’t necessarily a bad thing.
What started as a sense of invincibility before NMOSD had now become a sense of empowerment. Now, I felt that I could handle what life threw at me because I was strong, capable, and smart. Even though everything I read about NMOSD on the Internet was scary and offered a less-than-ideal prognosis, I had hope that I would defy that.
I dedicated a lot of time to research. I learned as much as I could about NMOSD and looked for any clinical trials and experimental treatments that were in development. I started doing everything I could to improve my health. I changed my diet, and with my doctor’s permission, took supplements, exercised regularly, and went to bed earlier (most of the time).
During this time, I also started to appreciate life more. My husband and I moved to California and continued to travel. We stopped to savor beautiful sunsets, mountain vistas, and sparkling city lights. I cherished every moment of walking my dog, running, dancing, or snowboarding. We welcomed our twin daughters into the world, and my life became even more beautiful. I even got the opportunity to meet other strong, brave, and resilient people living with NMOSD through online support groups, and we commiserated with each other. I was determined not to let my diagnosis stop me from living the life I wanted—the life I deserved.
By this time, my doctor had taken me off my initial therapy because it wasn’t the right fit for me and my NMOSD, and I had been on an infusion therapy for several years. During one of my routine visits with my neurologist in 2021, he brought up a recently approved treatment option for AQP4+ NMOSD called ENSPRYNG. My doctor explained that ENSPRYNG was a subcutaneous injection therapy given under the skin that would be administered every four weeks after taking three starting doses in the first month of treatment. Together, we discussed the possible serious side effects including infections and increased liver enzymes. We also discussed the potential for other side effects. Although I was hesitant to try a different treatment, my doctor and I decided ENSPRYNG was a good option for me.
Today, ENSPRYNG has been effective for me in preventing NMOSD flare-ups and relapses. After getting approval and training from my doctor, I have been able to administer the subcutaneous injections myself at home. My doctor made sure I knew to contact the clinic if I ever had a missed or delayed dose. Currently, my NMOSD is stable, and my doctor and I are pleased with my results. Since starting ENSPRYNG, I have not had a relapse and have not experienced any side effects. Of course, this is just my experience, and your experience may be different. I also like that ENSPRYNG is taken once a month. As a working mom to young twin girls, it fits into my busy schedule and lifestyle.
There have been a lot of things that have helped me throughout my journey, starting with my own combination of strength, hope, knowledge, and perseverance. Being surrounded by a community of supportive family and friends, my dedicated healthcare providers, and the NMOSD advocacy groups I’m a part of is truly so special.
On top of the support I have been so lucky to receive, I am perhaps most grateful for the availability of a therapy like ENSPRYNG that is specifically targeted to treat my NMOSD. Adding into the mix a sprinkle of good luck, I’ve been blessedly relapse-free since starting ENSPRYNG.
Most days, I don’t even think about NMOSD. I’m a mom, a wife, a daughter, a friend, a pharmacist, a nutritionist, and lastly, an NMOSD warrior.
I know now that I am not invincible. But I have learned that I am more resilient than I ever knew. And today and every day, I am full of hope.
Thank you.