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Kailee’s Story – My NMO Diagnosis

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

My name is Kailee. I am a mom, wife, daughter, teacher, dance instructor, and I have neuromyelitis optica spectrum disorder (NMOSD).

I was diagnosed at 25 years old, in May of 2020, at the beginning of the COVID-19 pandemic. I want to share my story and bring awareness to this rare disease. My goal is to help others who may be facing their own battles by showing them that they are not alone.

I am writing to share the strength I have gained – a strength I never knew I had. I want to show my daughter how to persevere when life gets hard. And I want to dedicate this to my Nana, the woman who always believed in me and will forever be proud of me in heaven. 

In March 2020, I started feeling extreme itchiness in my underarms. I found myself up at night constantly itching myself, thinking I was having an allergic reaction. It was so bad that after teaching my dance class, I chose to stop by the clinic to get some medication. There was no visible rash, but my underarms were bright red and blotchy from me constantly itching them. The doctor at the clinic prescribed me a steroid and sent me on my way. As soon as I started taking the medication, I felt a little relief but kept up with the lotion, ice, and oat baths as the sensations didn’t entirely dissipate. 

A week later, the itchiness returned worse than before and spread to my upper body. I had to leave work because the pain was so excruciating. The following day, my school was forced to shut down because of COVID-19. Although this relieved me of having to work in person while in severe pain, it created a new burden: 

How was I supposed to figure out what was going on with my body when the world was shutting down in the midst of an unprecedented pandemic?

Moving into April, the pain did not disappear. It lingered. My husband and I decided to move out of our apartment and into my parent’s home for a few months while my husband finished building our house. As soon as we moved in, the itchiness escalated and traveled to my abdomen. But this time, the pain was a numbness that felt like pins and needles. It hurt me to walk, lay down, and even breathe. I was then sure that I pinched a nerve while moving, so I made an appointment with a chiropractor. He assured me that my body was out of alignment and that he would help relieve that pain. Unfortunately, the treatment only intensified the pain and was one of the most painful experiences of my life. That night was the lowest point of my journey to date. 

I was hysterical; the pain was moving to my legs and arms. I couldn’t handle anyone touching me. I couldn’t move my head. I could barely walk. 

I was terrified. 

I knew this was not right. Finally, I turned to my primary care doctor. I got a tel-a-doc appointment and began explaining everything that was going on. To this day, the pain that I was experiencing throughout my entire body is indescribable, and, to top it off, a blurry line formed in the vision of my left eye. After hearing everything, my primary care doctor scheduled me for an appointment with an eye specialist and scheduled an MRI. During this time, I was teaching 3rd grade virtually. I was showing up each day with a smile on my face for my students – my students whose world was also in shambles as the pandemic was turning it upside down. 

By the time I got to the eye doctor, it was the middle of April. My eyesight was completely blurry, and I could barely walk into the appointment that my mom drove me to. After all of the tests, the eye doctor told me that they thought that I was forming an astigmatism in my eye. An astigmatism, really? It still didn’t seem right. It all came down to the MRI. They ended up doing an MRI of my spine with contrast. And let me tell you, sitting in that machine with a mask on was awful. After the test was complete, the radiologist met me in the waiting room. He asked me what my symptoms were, and I told him about my severe pain, numbness, and now fully blind left eye. He told me to look into a disease called NMO and ordered me to do an additional MRI of my brain. 

After searching Google, my mom and I were dumbfounded. How could this be? My mom and I were in search of any positive stories about this disease. Instead, we found an overpowering amount of terrifying information. I couldn’t sleep as I could only visualize the worst-case scenarios; my life goals and dreams now seemed out of reach and completely irrelevant.

 A few days later, I returned and completed the MRI of my brain. This was where the radiologist was certain that I had NMO as he saw the lesions on my spine and brain. But he wanted more proof. So, he ordered me to get a ton of bloodwork, 13 vials to be exact, and to visit the neurologist. My world was quickly closing in around me. I was always a healthy, athletic, and strong young woman. But at this point, I was weak and unwell. 

At the beginning of May, I received the phone call that nobody ever wants to receive. In a very cut-and-dry demeanor, the neurologist stated that because of the lesions on my spinal cord and brain and an antibody called anti-AQP4 found in my blood, he was positive that I had this lifelong disease, NMO.

I could not wrap my mind around it. 

So, one week later, I visited a second neurologist to receive an additional opinion in hopes of getting different news. But, instead, I received confirmation. This doctor told me, with great sympathy, that I did, in fact, have NMO, that I am 1 in a million and his only patient. Actually, I am the only patient that any of my doctors have ever had with this extremely rare disease. 

My next thoughts were: What is this? How do I fight it? How do I get rid of it? 

Neuromyelitis optica spectrum disorder is a very unpredictable disease. This autoimmune disease affects the central nervous system and can cause permanent nerve damage and result in permanent disabilities. There is no cure. But I can fight it through treatment. My neurologist confidently told me that there was a new medication that was proven to be highly effective. He told me I would have to get it infused indefinitely, every two weeks. 

With great encouragement, he assured me that,

“this is not the end for you. It is just a bump in the road.” 

I knew I needed to try this medication but felt defeated and scared. Because of my family and friends, I gained the courage to push through and give it a try. This led me to my journey with my super drug, Soliris.

After beginning my treatments, I allowed myself time to recover from my attack. As I gained more control of my body, I started contacting my doctors. With the support of my primary neurologist, OB, and maternal-fetal medicine specialist, my husband and I felt confident in beginning our own family. Once I was pregnant, my baby and I were watched closely by visiting my doctors weekly. My end result was a very healthy pregnancy with a very healthy baby, all while on Soliris. 

On January 27, 2022, I was blessed with a beautiful baby girl.

Something that I thought was out of the question for me with my NMO diagnosis was now in my reality and in my arms. 

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