Discover ENSPRYNG Stories
Your journey is unique, but you're not on it alone. Meet our ambassadors and explore their journeys with NMOSD. From first symptoms to treatment, here's how they learned to manage their NMOSD.
Their stories start with an NMOSD diagnosis - then they met ENSPRYNG.
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.
Shekita's Story
Yes, this disease has slowed me down a lot, but it hasn't stopped me. My name is Shekita, 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.
Looking for resources?
Get information for people living with NMOSD
On ENSPRYNG?
Help inspire others by becoming an ENSPRYNG Patient Ambassador. To learn more, 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.
Hello, my name is Cheena, and I want to 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.
At the end of that hospital visit, it was still unclear what was happening. After my situation improved with 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. The following day, they discharged me. I was told to follow up with the neurologist and rheumatologist for outpatient visits.
I followed up with my neurologist, and we talked about taking some blood samples, and medications. 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 didn’t know what to do and I needed processing time.
The summer slipped away. Labor Day weekend, I gathered with family. 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. 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. 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.
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.
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?
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®. 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.
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. Connecting to others with NMOSD makes me feel less alone, and I am grateful that there are many 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. As I continue on my journey, I see that my future is bright.
Layla's Story
I’ve always enjoyed painting. Before my diagnosis, I would stress about making my paintings look exactly like the thing I was trying to paint. 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 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.
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 my symptoms grew worse, I started to lose color vision, so I went to the hospital. 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. The possibility of getting diagnosed with a neurological autoimmune disease while abroad was the worst thing I could imagine. A feeling of 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.
When my husband and I returned to the U.S. in 2021, we were saving up to buy a house and 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 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. 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, he 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 alternative diagnoses from 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 a 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 now that I had a disease that affected the central nervous system and optic nerves. 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.
Looking back on the past 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. They 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.
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.
After my doctor prescribed ENSPRYNG, they approved me for self- administration and trained me to administer the treatment on my own. My doctor made sure I knew to contact them if I ever had a missed or delayed dose.
Soon, I got a call from a Patient Navigator who sent me a Starter Kit and helped put my mind at ease by answering all my 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 training virtually from home. My Patient Navigator was awesome. I loved that I had a dedicated person I could text or call with questions.
As I became more comfortable with my diagnosis, I began to look into what great NMOSD support organizations out there! That’s when I found the Guthy-Jackson® Charitable 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.
Like painting, 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 look and feel different and life may not be exactly what we had in mind or what we planned.
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.
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 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. I was the person who knew how to get stuff done.
I later met and married my husband. We’ve been together for many years, and I’m proud to say I’m a wife of an Army vet. We have two children together. 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. 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).
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.
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. 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. Any hope I had that doctors would ever figure out what was going on was completely gone.
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 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. 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 treatment, 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. 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 years of ups, downs, grieving, and everything under the sun to come to terms with this diagnosis. I began a treatment but decided to do some research about other 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.
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.
Yes, this disease has slowed me down a lot, but it hasn't stopped 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.
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 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 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 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.
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 medication 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, 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. 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. 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.
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.
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.
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. 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.